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Thursday, December 14, 2006 8:38 PM CST

No more radiology scans!!! Hooray! Carson completed his last round of scans (CT, bone scan and MIBG) with flying colors. He truly is amazing. Even though we put in 8-9 hour days at Children’s Mercy Hospital each of the three days he had his scans, it was still so much easier than it used to be when Carson was an infant. Carson went all three days without a single tear shed. Amazing!! Two IV pokes, sticky electrodes, blood pressure cuffs, thermometers, 12 ounces of oral contrast, two IV pullouts and tape removal…..none of these made him cry. On top of this, each of the three days he went six hours without food. We found out today that his tests all came back normal. This was our last set of follow-up scans. From now on, we only go in for checkups with the oncologist. The only tests they will do are urine and blood, which is so easy compared to our long scan days. We are ecstatic!

Much has changed since we updated this website last June. Carson now has glasses. We took him to a pediatric ophthalmologist in August because his eyes started crossing every once in a while. He was diagnosed with accommodative estropia, which is corrected with glasses. He is farsighted. There is a chance he will grow out of this, but the ophthalmologist informed us this might not happen until his early teens. To our surprise, Carson takes really good care of his glasses.

As of the middle of November, Carson is potty-trained - day and night. He is so proud of himself. Developmentally, he is doing well in all areas. He loves reading books, playing with cars, trucks, and trains, playing games, going to the park, gymnastics, Sunday School and to the library. As most toddlers do, Carson says the funniest comments and loves to make people laugh. He loves to be just like his daddy. For example, Carson will insert mommy’s name into songs he sings and then laugh.

We have met a new family with a little boy with neuroblastoma. His name is Lane and he was diagnosed at the age of nine months. He has the same oncologist as Carson and as of a few months ago, he also has the same primary care doctor as Carson. Lane’s family is building a house just 10-15 minutes south of us. We have gotten together a few times since Lane has started chemotherapy. Please keep him in your prayers. He just completed his 6th round of chemotherapy. His website is: www.caringbridge.org/visit/lane.

As for us, we probably won’t be updating this website anymore. The chances of Carson’s cancer coming back is very, very low. He has made it to his “5-year survival”, as they use with adult cancer patients. Since he was diagnosed as a baby, his 5-year survival is actually 2 years. We have conquered cancer in this household!!

Thanks for keeping tabs on Carson. We appreciate all you have done. All of your prayers helped so much!

Take care,
Kristi, Matthew and Carson Toews

Sunday, July 9, 2006 9:59 PM CDT

One more set of scans down! One more set to go (in December). Carson completed his June radiology scans, which included a bone scan, CT and MIBG. It was three days total. For the first time, Carson DRANK all 12 ounces of his CT contrast. For future reference, the reverse psychology method works like a champ. As the cutoff time to have the CT contrast in approached, Matt kept telling Carson “Don’t you be drinking that!” Of course, being an ornery toddler, Carson wanted to do the opposite of what his daddy was telling him to do. So, he drank it until it was gone. Therefore, he did NOT have to have a nose tube put in! That made our day.

Carson is tolerating everything much better at the hospital. When they put the blood pressure cuff on, Carson pointed to the machine and said “start it”. He was telling the nurses which finger or toe to put the oxygen wrap on each day. He also did not mind getting his temperature taken. Six months ago he screamed bloody murder when they did all of those procedures. The only time he cried was when the nurses put his IV in, which is understandable! The first day when we told Carson the nurses were all done putting the IV in his arm, he stopped in the middle of his scream and said “YES! All done!” And he was instantly happy. It was so cute.

All of his scans came back fine. Hooray! His urine and blood were normal. Carson will do his LAST set of scans in December of this year. If those scans are clear, Carson will only have to go in for annual checkups. He will no longer have radiology scans.

We have scheduled an appointment with a pediatric ophthalmologist for the end of August. Carson has recently developed a slight lazy eye. The pediatric ophthalmology office had a 2 ½ month wait to get in. We will try to keep everyone informed about that.
Take care!

Saturday, April 8, 2006 9:37 PM CDT

Time sure does fly. I can’t believe it is already April. I hope everyone is doing well! We are all staying healthy and happy...enjoying living the "normal life". In March, Carson celebrated his 2nd birthday, had his 2 year “well-baby” checkup as well as his oncology checkup at Children’s Mercy.

Carson had a train-theme for his 2nd birthday party. He had a great time with family and friends. To Carson, the best part of the whole party was the balloons. The day after he turned two, he started climbing out of his crib. So we made the big switch to a toddler “car bed”. After two plus weeks, he is finally staying in his bed well at bedtime. He is really enjoying the new independence that comes with the toddler bed transition. As parents, Matt and I were excited to put the crib away and move on to the next stage of toddler hood.

Carson 2-year well-baby checkup went well too. He is in the 50e for both weight and height. We did a Denver Developmental Screening and he is doing great developmentally in all areas. He is now getting both feet off of the ground when jumping; he is putting 4-6 word sentences together frequently, asking wh-questions and his eating/drinking habits are great. It is so nice to be reassured he is doing well in all areas after all he has been through.

At the end of March, we made a trip to Children’s Mercy hospital for his oncology checkup. It was the first time we have ever gone three months without seeing Dr. Max. Although it was exciting to go less frequently, it scared us waiting so long to be reassured he is doing fine. His blood and urine levels continue to stay in the normal range. Our next visit to Children’s Mercy will be in June. At that time, Carson will do his bi-annual radiology scans: CT, MIBG and bone scan.

I will do my best to add new pictures on this page soon. Carson is terribly hard to photograph anymore. He says “cheese” and then runs off. I usually get a goofy picture of Carson running away from me or towards the camera. They all end up blurry.
We’ll post again after Carson’s scans in June. Thanks for checking in on us.

Kristi

Wednesday, January 4, 2006 7:59 PM CST

My sincere apologies for not updating this sooner. Carson went in for his X-Ray and bone scan on Dec. 27th. The radiologist compared his MIBG scan with the x-ray and bone scan and have ruled out the possibility of metastatic neuroblastoma. The spot that lit up in the MIBG was most likely from the knot caused by his MMR vaccination that he had just received. Carson will have an oncology checkup March 28th, but he won't have scans again until June. We always dread all of the scans, so we are thrilled we are done until June. I hope everyone has a happy new year!!

Take care,
Kristi

Tuesday, December 20, 2005 8:41 PM CST

Merry Christmas Everyone! Carson is 21 months now and is talking constantly. Of course I am bias, but I think he is such a great well-mannered kid! I apologize for the not updating everyone on Carson’s December scans, but we just found out the results today. We went to Children’s Mercy this morning for Carson’s oncology checkup and results.

Last week, Carson had a CT scan and a MIBG as scheduled for follow-up. He was a trooper during the two days of scans. He was required to drink 12 ounces of contrast mixed with juice before the CT scan, but we could only get him to drink 3 ounces over several hours. We knew he wasn’t going to willingly drink 12 ounces because he said “yucky” after every sip. So Carson had to get a NG tube to get the other 9 ounces down. The whole thing only lasted about 3 minutes, and the nurse quickly took the NG tube out and Carson immediately started playing with his toys happily.

Next came the IV. Carson very sternly told the nurses, “NO, NO, NO, NO!” Then when that didn’t work, he decided to sing the ABC’s with me. Cute and sad at the same time, Carson sang every letter slowly in between his screaming. I think he was trying to calm himself. Both days of scanning, Carson woke up smoothly and happily from anesthesia. When this happens, Carson gets to eat and drink faster which makes everyone happier!

Today, we went in for our results. The tumor markers (HVA and VMA) in his urine continue to be in the normal range. His CT scan was normal, but his MIBG showed a new spot on his right thigh. This confused our doctor because his tumor markers are normal. We explained to our oncologist that Carson had his MMR vaccination in the right thigh the day before Thanksgiving. After the MMR vaccination, Carson developed an infection in the area he was given the shot. It become a huge knot for quite awhile and was still present during our scans last week. Carson’s oncologist agrees that is probably what caused the soft tissue in the right thigh to light up on the MIBG. Carson’s oncologist isn’t worried about it. However, we still have to do an X-Ray to rule it out. The X-Ray will be done at the same time as his bone scan, which hasn’t been scheduled yet. (Some of you may remember that we can’t do the MIBG and bone scan within at least a week, maybe more, of each other because it will skew the results of the latter test.)

Matt and I always get so nervous for these scans because there are ALWAYS false-positives. Then we have to worry about the results until it is ruled-out. We are back to where we were last Christmas…..not knowing.

Take care,
Kristi

Monday, October 17, 2005 10:15 PM CDT

Hi! I just thought I'd add another quick update letting everyone know that Carson continues to do well. He had an oncology appointment last week and his urine and blood work came back good again.

Carson will be 19 months old this week. He is putting three word phrases together now such as "fries all gone"; "mama up please", etc. He almost always gets from point A to point B by running. And although he still looks skinny, he eats like he is a 16 year old boy.

Carson has another 2 months break from Children's Mercy Hospital. He'll go back Dec. 13th and 14th for an MIBG and CT scan. These scans just get harder and harder for Carson as he ages, so it won't be fun watching him go through it again. We'll write up an update after the scans in December. Take care!

Tuesday, August 23, 2005 9:00 PM CDT

It was one year ago today that Carson was diagnosed with Stage 4S Neuroblastoma. It has been an extremely long year for us, but the worst part of his journey is all over. We have so much to be thankful for. During our 15 day hospital stay last August, we had wonderful medical care from many pediatric oncologists, dermatologists, lactation consultants, dietians, respiratory therapists, surgeons, cardiologists and the best nurses!!! We have been so lucky to have a great Children's Hospital within an hour away. Carson has been cancer free since he had his primary tumor removed in December 2004, and has been doing great ever since. We appreciate all of the prayers and support we received from everyone. It definitely lifted us up when we needed it. We will never forget about all of the support that was given to us. We have kept all of the cards, gifts, etc. for Carson to see when he gets older. I am sure he will also love reading the guestbook to see how much he is loved. For our thoughtful friends who already signed our guestbook today, thank you!!

Carson is now 17 months old and loves life. He is definitely “all boy”. His favorite toys are always cars and trucks. He looks like a little man when he plays with his remote control dump truck called “My First RC”. He loves picking tomatoes from the garden and eating them like an apple….and he is so fast that mommy doesn’t see it half of the time. New words come out of Carson’s mouth everyday, which is really exciting. Every since his diagnosis, I have anxiously waiting for him to talk. Now he talks constantly.

Our August oncology appointment went well. Carson’s VMA/HVA urine levels (tumor markers) are still normal. We do not have scans again until December. Then if all goes well, Carson will have scans in Dec. ’05, June ’05 and Dec. ’06. If those are all clear, he will no longer need to be scanned. Our next oncology appt is in October, so we’ll give you all an update at that time.

Kristi

Friday, July 29, 2005 10:10 PM CDT

We are back from a very relaxing trip to the Lake of the Ozarks. We rented a cabin about 15 feet from our own swimming dock! It was great. I have posted pictures of Carson on our vacation.

If you have not heard, Carson’s scans all came back good….including his MIBG. Now that Carson is talking more, we are presented with new challenges on our scan days. When the nurses were putting Carson’s IV in, Carson screamed “ALL DONE, ALL DONE, ALL DONE!”, meaning he wanted them to stop. Then once they had the IV in place and taped up good so he wouldn’t mess with it, he kept pointing to the IV and demanding “Off!”. Carson also had the unfortunate experience of having a nose tube inserted to get his CT contrast down him (since he wouldn’t drink it). Well as the nurses were putting the fluids through the nose tube, he kept looking at me sadly saying “up!”. He wanted me to pick him up and comfort him, but I couldn’t until they were done. However, on a lighter note, Carson does much better going without food than he did when he was younger. He is not allowed to eat anything 6 hours before the scans each day.

Carson is now 16 months old and doing great. He is saying between 40 and 50 words now and a few two-word phrases. He started walking shortly after turning 15 months and now he is walking constantly.

Our monthly oncology appointments have been moved to every other month. And Carson’s scan schedule has changed from every 3 months to every 6 months. So, Carson does not have to be scanned again until December. Hooray!!!!

Take care and thanks for checking up on us!
Kristi

Sunday, July 24, 2005 9:12 PM CDT

We still don't have Carson's full test results yet. We received word that his CT is o.k., but nothing on the MIBG yet. We rented a cabin at the lake of the ozarks for this week, so we'll be gone until Thursday. It's Carson's first vacation! We'll post our results of the MIBG when we get back. Thanks again for your prayers, scan days are always VERY long, and it's good to know you are still checking up on us!

Friday, July 15, 2005 9:04 PM CDT

Just a quick update to let you all know Carson's bone scan came back normal! His HVA and VMA levels in his urine were also good again this month! So far, so good. His CT, and MIBG scans will be next Tuesday and Wednesday, we'll keep you updated when we get those results as well.

Wednesday, July 6, 2005 8:30 PM CDT

Hope everyone had a great Fourth of July! Carson slept through all of the loud fireworks which is great for him. He is finally sleeping through the night and napping really well!! He has also become somewhat of a heavy sleeper.

Carson is saying about 25 words now. His new words are "hot", "off", "open", "more", "bubbles", "outside" and "all done". He says the words "hot" for hot and cold, but at least he knows when the temperature feels different. He is finally taking a few steps on his own, but only takes between 2 to 5 steps a day for now.

We had our monthly oncology appointment yesterday and all is well. After his quarterly radiology scans this month, if all goes well, Carson will not have to be scanned again for another 6 months!!! Hooray!! Next week, he will go in for a bone scan. Then the following week, he will go in for his MIBG and CT scan. Then we will be done until December! We'll let you know how the scans go this month.

Sunday, June 12, 2005 10:20 PM CDT

Sorry it has been so long since we have updated. Time flies when you’re not living the “cancer life”. Carson continues to do great. His VMA and HVA levels (tumor markers in urine) continue to go down! HVA is 18.4 and VMA is 9.2 ; both are in the normal range. When he was diagnosed, both his HVA and VMA levels were in the 1700s!! What a huge difference!

At the end of May, we made our first official visit to Carson’s pediatric endocrinologist since he was diagnosed with hypothyroidism (mild case). It took a very, very long time to get an appointment with them. Anyway, his endocrinologist does not feel that Carson is truly hypothyroid. Because his thyroid levels were normal before beginning chemotherapy and they were only mildly off after starting chemotherapy, she feels like it was just a temporary hormone change since he was sick…..which is very common in young kids. Since good thyroid levels are critical for brain development before the age of two, she would like to keep Carson on his thyroid meds until age two and then wean him off. If he does well off of the meds, he won’t be considered hypothyroid and he won’t have to take that silly little pill everyday anymore!

Carson has definitely gained all of his energy back. His favorite activity is going up and down the stairs. He can slide down the stairs really fast backwards on his belly. He is extremely close to walking. He has taken one or two steps several times as he falls. The physical therapist told us that Carson’s gross motors skills are all age-appropriate now and she is dismissing Carson from services. Carson is definitely turning into a healthy, energetic toddler.

Carson is finally sleeping really well at night again. He has a verbal vocabulary of between 10-15 words and he can also sign about 15-20 different words. His favorite phrase to sign is “more eat please”. His favorite words to verbally say are “phone” and “hat”. He is fascinated with phones and hats and considers both of them toys!

We will try to keep you posted about our doctor’s appointments and Carson’s progress. As you have probably already noticed, our journal entries are becoming less frequent. Just remember “no news is good news”.
Take care,
Kristi

Wednesday, May 4, 2005 9:38 PM CDT

I thought I should write a quick journal entry to let you all know that Carson does not have pneumonia. He just has a normal childhood virus that just happened to develop immediately after surgery. What terrible timing!

Carson is finally starting to feel better. His fever finally broke Tuesday, but he is still battling diarrhea. And he is sleeping a lot lately...which is great for the whole family!

Our oncology nurse called the other day to let us know that Carson's VRE test came back negative for the 3rd time! This means that Carson does not have to be in isolation anymore when he is visiting Children's Mercy. This is great news to us as it is very difficult being in isolation while we are there.

Thanks for checking up on us. Hopefully, this cold and flu season will come to an end soon.

Sunday, May 1, 2005 9:28 PM CDT

After making it through Carson's entire chemo regimen without a single trip to the ER, Carson's luck ran out and we had to make his first trip tonight. Friday went so well, we thought we were in the clear, but Carson woke on Saturday morning with a fever and an extremely swollen face. His left eye could barely open at all. We made a visit to our family doctor here in Lawrence, and she didn't see any explanations, so we just decided to watch and see what would happen. The swelling was completely gone by Saturday night, but the fever was still lingering around and he was just not feeling good at all. Today his fever was inching higher all day even though we were pushing in the Tylenol, and it got up to 104 by 4:00. We called our family doctor, and the oncology doc in KC and they both agreed we should go to the ER here in Lawrence. After blood work and a chest x-ray, they concluded he has pneumonia. The radiologist will look at the x-ray tomorrow to confirm, but that is what they are treating him for. We are now doubling up on Motrin and Tylenol and his fever is much lower than it was. Hopefully, it is just pneumonia, another treatable problem, and we can move on.

On the good side of things, Betty called us and said the scans from Friday look good! The bone scan was normal, and the CT looked unchanged from November, with a slight improvement in his liver. That's improvement with no chemo!!! Nothing but good news there. As long as he can get tonight's sickness behind him, he can then move on to another!!!!

Friday, April 29, 2005 9:31 PM CDT

Today was a successful day! Carson is now port free! Everything went according to schedule and he got the bone scan, CT, and port removed all in about 3 hours. Needless to say, it was another extremely long day, but another day closer to having a "normal" little boy. We are thrilled to have the port out for the first time in 9 months. He is all bandaged up over the site, so we haven't seen it yet, but we are supposed to take that all off in 3 days.

We had to go early today, becuase Carson is still suffering from a cold and anesthesia had to decide if he was to sick to be put under. Luckily, they decided it would be fine, so he got his injection for the bone scan and then slept until scan time. We had to give the contrast for the CT last night and another round this morning, but he got it all down. (took about an hour and a half each time for just 6 oz) We were very thankful he didn't have to have an NG tube. After about 3 hours, he was finished and extremely groggy. It took him quite a while to wake up since he had been out for so long. When we got home tonight he was exhausted and went to bed at 6:30, and we haven't heard a thing from him since. I guess all that sleeping today wore him out!

We are guessing his jugular vein must be working somewhat again, because the accessory vein on his neck has completely disappeared. The veins in his chest are already much less prominent than they were this morning. We were told the jugular may never carry blood again, but it must be doing something if those other veins are disappearing. We'll see what kind of explanation we get from Dr. Max next time we see her. We'll let you all know next week when we find out results from the day. Thanks for checking in!

p.s. Kristi put up a couple of pics from the hospital today in the photo section.

Thursday, April 14, 2005 9:37 PM CDT

I evidently need to work on my explanations a bit! Carson didn't have surgery today, it was just to be scheduled today. They decided to wait until his next round of tests in two weeks. He will have the bone scan, ct scan, and then get the port taken out. As long as it's not a problem to wait this long we are happy as that means only one sedation, and one day without eating. We were both under the impression something would be done a little quicker, but as long as this works out it will be fine with us.

Wednesday, April 13, 2005 9:36 PM CDT

Well, today was another interesting and unexpected chain of events. The good news first, Carson's bone marrow is clear! I also got to hear the official MIBG report, and there is no concern over the other adrenal gland this time. Good news!

Now for the twist in our day. Last Sunday we noticed a new "lump" had appeared on Carsons neck in close proximity to the cathetor portion of his port. We immediatly called Children's Mercy and were reassured this was probably scar tissue in the vessel from the port irritating it. Kristi emailed a picture on Monday. We talked further and they decided it still was not a big deal, but we could have an ultrasound done if we wanted to put our mind at ease. We decided to wait and see if anything changed. Well, last night, the veins in Carson's chest on that side of his body became very prominent and it was obvious something was not right, so we got Carson scanned today. It turns out he has a blood clot in his jugular vein. The "lump" and other vessels we are seeing are picking up the slack since the jugular is completed clotted off. I called Children's Mercy right away and Betty said we will need to take his port out. Since we are done with chemo, this hopefully won't be a big deal. The monthly blood draws will be more of a challenge, but we can deal with that. We are just thankful it is something that can be corrected. It's funny how cancer changes your prospective. I never thought I would be glad my 12 month old only needs surgery! Betty is going to try to set it up and let us know tomorrow when it will be. The port had to come out sometime, it will just be a little sooner than expected!

Carson continues to battle his cold. He has had a slight fever still lingering around, and still isn't sleeping. He does seem to be feeling a tiny bit better at times, so hopefully he's on the mend!

Monday, April 11, 2005 8:34 PM CDT

We are still waiting for official results on the bone marrow and MIBG scan. We did find out that the tumor markers in his urine were normal again. His VRE test was also normal, so one more normal test will make three and he will be out of isolation!

He came down with a nasty cold this weekend and has been feeling really rotten since Saturday. We went to his "normal" doctor today and got started on some medicine to get rid of it. He evidently can't get enough of the doctors!

Hopefully we will have something to report tomorrow in the way of results, we'll let you know when we do.

Thursday, April 7, 2005 1:54 PM CDT

2:00 PM

Just a quick note to let everyone know that the preliminary results are in. The radiologist said his MIBG looks good, but he still needs to take a more detailed look and write his report. But whatever lit up in his colon passed, so it was probably just bowels that soaked up some of the MIBG injection. Matt will probably write a more detailed description later, because he understands it better than I do. Just thought I'd let you know. Thanks for checking.


8:30PM

We don't really know anything further to let you in on. We got a call this afternoon from Betty and she said Dr. Max had spoken to the radiologist and he said there was nothing to worry about. We don't know for sure what exactly that means, but we know the cancer hasn't spread to the bowel. As for the liver, we don't know yet what it looks like until we get the official report. No word yet on the bone marrow aspiration, the urine levels, or the VRE results. BUT, a big sigh of relief finding out the colon is OK. Whew, what a roller coaster.

Wednesday, April 6, 2005 8:15 PM CDT

Believe it or not, today was the best time-table we've had since we started this process. The hospital called right as we were heading out the door and said get here as quick as you can! We arrived to a waiting room PACKED with people, and they told us we could sign in later, they were waiting for us. They accessed Carson's port and he was sedated before we even knew what was going on! Now that's service.

We woke him at 4:30 to eat breakfast, and he actually ate pretty well and went back to sleep when he was done. He was getting pretty fussy before we left home, but he tired out in the car and slept most of the way there. He was sedated by 11:00, so that was our best case scenario.

Unfortunately, not all the news was good today. There evidently was an abnormality in his colon that hasn't showed up before. This means we get to return again tomorrow for another scan. Occasionally, the colon "lights up" with the normal physiologic process, and it should appear normal by tomorrow. If it show's something tomorrow, that could be bad news. We'll just have to hope and pray that it's nothing. The scan tomorrow is supposed to be at 9:30, so Carson will be asleep for most of his "non-eating" time. Pray for the best and we'll let you all know the results as soon as we do.

Tuesday, April 5, 2005 7:50 PM CDT

Another day down! Carson's day went pretty well. He did much better on an empty stomach today than he has in the past. Today was the first time we've had to be NPO with him eating solid foods and they seemed to tide him over much better than just milk! He polished off breakfast about 7:45 and didn't eat again till 4:30, but only really had one screaming fit (in honor of hunger) the entire day. It was much easier to occupy his time now that he actually likes to do something other than just sleep and eat. He spent some time on the hospital playground and had a blast. He was a big fan of the slipper slide.

As for the scan, the injection couldn't go through his chemo port, so they had to start a different IV on him. His veins weren't cooperating so he had to be stuck a couple of times. They then accessed the port for a lab draw and kept it accessed for the anesthesia. The scan and bone marrow biopsy went off without a hitch. Dr Max said the bone marrow was easier to get now that he's a little older. The last time, she had some problems getting a good sample, but today went well. The day went by fairly smoothly and on time. Tomorrow may be a different story. They were unable to give us a definate time for his scan, so they told us to stop feeding him at 5:00 am, and they will hopefully do him by noon. It didn't sound like they were to optimistic though, I think noon was the best case scenario. I'm really doubting Carson is going to eat well if we wake him up at 4:30 to eat. If he doesn't get scanned until the afternoon, he's going to be a handful!

Monday, March 21, 2005 7:24 PM CST

More good news to report today, Carson survived his first birthday! Cancer is one thing, but eating cake is survival of the fittest when you turn 1! We had a wonderful day starting with Carson's baptism followed by his birthday party. He was a bit slow to take to the cake, but when he figured it out he didn't mess around. We finally took the cake away after he ate about a fourth of it, because he showed no signs of slowing. He was a pretty blue little boy when he was done, and he headed straight to the bathtub and a nap!

On the medical front, we have more good news also. The tumor markers in his urine were in the normal range again this month, that's two in a row! His VRE swab also came back normal for the first time. He has to have three in a row to be taken out of isolation, so he is one third of the way there. Our next trip to KC is in two weeks for two days of tests.

Thanks for checking in, more in two weeks!

Wednesday, March 9, 2005 4:14 PM CST

We had another clinic visit yesterday and all went well. What we thought was going to be a quick visit turned into an all day event. Dr. Max felt around on his tummy and didn't find anything new. She thinks he is doing well. He had his blood drawn again, and they needed another urine sample to check the HVA and VMA again. Carson's inability to pee on command cost us several extra hours. We put a bag on him to collect the urine and after about 2 hours we realized everything was leaking into the diaper and we had no urine! After deciding to try another method of collection, he apparantly had expelled all he was going to and he wasn't about to help out. We waited, waited, and waited some more, and no urine. We finally got an order to do it in Lawrence, and by the time we arrived home he had done his part, so I ran it down the hospital here.

Our next step is going to be scanning again. He will have the MIBG on April 5 and 6 along with another bone marrow aspiration. Then he will get a bone scan and CT on April 29. With all of the good news from his urine and blood, we are expecting more of the same.

If you all haven't noticed, Carson's first birthday is coming up! He is also going to be baptized in two weeks. We are looking forward to getting this first year behind us and moving on to some less eventful ones! We'll try to post some new pics after his birthday, till then take care!

Wednesday, February 23, 2005 5:29 PM CST

The lab results are in!! The tumor markers in Carson's urine are finally in the normal range!! They are not even borderline. They are right smack dab in the middle of normal. YEAH!!!!!

He is still positive for VRE, which basically only means that Carson is put in isolation in the oncology office at Children's Mercy when we visit. It is not a big deal that he has it, they just do not want it spread to others who are immune deficient (chemo patients). It doesn't affect people with healthy immune systems.

After Carson made it through chemotherapy without getting sick, he is now suffering through his second cold since his immune system became healthy again. Isn't that crazy? We went to the doctor today. He is just starting to get an ear infection in both ears, has a nasty cough, isn't eating or sleeping, and feels miserable. So, he is now on antibiotics and a cough suppresant.

Other than being sick, Carson has been doing really well. He is sleeping so much better now that he is off chemotherapy. It is really amazing.

I hope everyone is doing well! Thanks for checking up on us!
Take care,
Kristi

Tuesday, February 15, 2005 7:13 PM CST

Just to update you all, we just turned in Carson's urine speciman yesterday. We got it accomplished here in Lawrence and they have to send it off to a different lab to process, so it could take up to a week. We haven't heard any results from the VRE test yet.

Tuesday, February 8, 2005 8:21 PM CST

Today was our first follow-up appointment since we were told that Carson is in remission. Our oncologist thought that Carson was doing really well. They accessed his port to draw labs and Carson did not cry at all when they stuck that huge needle in his port. He is such a strong little guy! They also took a urine sample to check his HVA and VMA levels. Unfortunately, we returned home to get a phone call from our nurse that they need another urine sample. It is a long story, but the short of it is that they want another one. To avoid another long trip to Children's Mercy, we are trying to arrange to get it done here at the hospital in lawrence.

Our oncologist told us that we can start up with immunizations again in May. We were not allowed to continue with his immunization schedule while on chemo. Waiting 6 months past his last chemotherapy will allow his immune system to build up so the immunizations will be more effective. I am so anxious to get that started again. With whooping cough going around, it makes me very nervous!

Other than that, it was a pretty boring checkup. But we like the boring checkups....with no suprise diagnosis'. Our next appointment is March 8th. Then in April, Carson will have to undergo another CT and MIBG scan. He will have these scans done every 3 months for the next year. Yuck!

Thanks again for continuing to check up on us. We really are doing great! We are LOVING our new "normal" lives. We'll let you know when we get the urine test done and what the results show. Hopefully we'll know results by next week sometime.
Kristi

Tuesday, January 18, 2005 8:33 PM CST

Hello! Long time, no post! Carson is doing great! He gains more and more energy everyday, which is so wonderful to see. He is able to stay more on a schedule since we do not have doctor’s appointments, lab draws, chemotherapy, hospital stays, blood transfusions, etc. Staying on a schedule keeps mom, dad and baby happy!

Carson has started physical therapy to help him become mobile. With three surgeries on his belly, he missed out on lots of tummy time. Also, chemotherapy drained him of all of his energy, so he never had a desire to become mobile during that time. Physical therapy has already helped a lot. Carson is starting to creep and pull-up.

Carson’s speech, cognitive and fine motor skills were also screened and were right on target for his age. We were very excited to hear that. All of those chemotherapy drugs really scared us.

Our next oncology appointment is Feb. 8th. It is just a checkup. They will also take a urine sample to check his VMA and HVA levels.

Thanks again for all of your support and prayers. You have all been wonderful to us!
Kristi

Thursday, January 6, 2005 9:20 PM CST

We finally have the news we have been waiting for....CARSON IS DONE WITH CHEMOTHERAPY!!!!!!!! After a rocky start for the day, we finally ended the day with the best news possible. There is no way I can type out all of the details but I'll include as much as I can.

At noon today we still had not heard any results, so I called to oncology and they didn't have any yet. I was getting a little irritated and impatient so I decided to call KU Med and get the results myself. They faxed them right over to me and it was a let down I wasn't prepared for. It said the liver still had diffuse involvement and there was a question as to whether the cancer had spread to the other adrenal gland. Not what I was expecting!!! I called oncology back and got their fax number and faxed them the report and asked them to get back to me before 2:00 because that's when we had to leave for KC to see the surgeon. Of course that timetable was a little quick and we didn't hear from them.

The appointment with the surgeon went well. No doomsday scenarios from him this time. He thought Carson's scar was healing and Carson was doing well.

We were hoping for a message on the answering machine when we returned, but no luck. Finally, at about 7:30 Dr. Max called with more news we were not expecting, NO MORE CHEMO!!!!!!!!!!! She had discussed Carson with the doctor in Australia again, and they were both comfortable with stopping chemo for now and just watching. Evidently, the ganglioneuroma's (the cells neuroblastoma evolve into as they are killed off) also light up on the MIBG, so most likely most of the liver involvement is benign. The doctor in Australia said that whatever is left will mimick the primary tumor. Since we know that only 3-5 percent of the primary was malignant, the liver tumors will be no more than 3-5 percent malignant and possible less than that. Research has also shown that once the primary tumor has been taken out, the other metastasis will resolve on their own without more chemo. After talking with the radiologists at Children's Mercy and reviewing all of his November 30th scans, they also decided that the spot on the left adrenal gland was most likely a false positive and nothing to be concerned with. So we are done with treatments! Hooray!

They will continue to monitor the HVA and VMA in Carson's urine every month and he will be scanned every 3 months. As long as the HVA and VMA continue to decrease, and the scans don't show any new growth, he won't have to do any more chemo. Of course, we are ecstatic with this news. In the last two weeks his hair has started growing again and he almost has hair all over his entire scalp again. He looks like he's had a VERY close buzzcut! This also means we can leave the house again whenever we want and go wherever we want, hoooooray!!!! Of course, we will have some anxious times in the future every time he has his urine screened and all of the scanning he has ahead of him, as well as another surgery to eventually remove his port, but there is finally light at the end of the tunnel.

Thanks to all of you who have kept tabs on Carson and for all the prayers and support we have received through all this. There is still a long road ahead, but it looks like the toughest part is behind us.

Wednesday, January 5, 2005 8:34 PM CST

Still no results. No-one called today so Kristi tried calling late this afternoon and the secretary said everyone had left early because of the ice storm. They evidently aren't quite as anxious to give us the results as we are to receive them! We head to KC tomorrow for a follow up with our wonderful surgeon. We are going to his office, not children's mercy so that won't help us get results any faster. Our surgeon always has some interesting opinions about Carson's case, so we are looking forward to his opinionated (which he thinks are facts) comments. Hopefully we'll have some more info to report tomorrow!

Tuesday, January 4, 2005 9:22 PM CST

Just to update you who are checking for results today, no luck. They called today and said they hope to have answers by tomorrow. They are still awaiting official results from the MIBG last week from KU Med.

Carson has come down with a cold and is not having to much fun with it. This is the first time he's ever been sick other than side effects and feeling crappy from chemo. He's got the sneezes, cough, spitting up, and blowing snot everywhere! It's quite an adventure for all of us. Hoping it clears up soon!

Sunday, January 2, 2005 7:35 PM CST

Our nurse called to let us know Carson's tumor markers in his urine dropped just slightly since surgery. She said Dr. Max has tried to contact her doctor friend in Australia about Carson, but he is out of the office till Monday. Our nurse said they will call Tuesday with results from last weeks scan and hopefully Dr. Max will get in touch with her friend and we will find out what the plan is then.

Wednesday, December 29, 2004 8:52 PM CST

Surprise, surprise, today was a long day! The anesthesia department didn't have Carson on their schedule for an hour after we were supposed to start, so we had to wait for them to start the exam. We started about an hour and 40 minutes late, and Carson was not to happy about it. He's never been a big fan of fasting for more than 4 hours and today he went from 6:45 a.m. until 2:30 p.m. without eating. Once underway the exam went well today. They brought Carson in his crib by the waiting room on his way to recovery and he was already awake and trying to get the light (for oxygen sats) off his finger. He didn't even see us as he cruised by. After inquiring about what time we had to be there tomorrow, the nuc med tech informed us we were done, no need for the third day! He had never heard of scanning on the third day, although that's what we did at Children's for this very same test. We are happy though, that means no trip to Kansas City tomorrow and no more sedation for Carson! That also means that they deaccessed his port so we don't have to worry about that tonight! (last night they left the needle in the port in his chest so we had to be very careful not to touch it or let carson pull on it)

I talked them into giving me a cd with his scan on it, so we headed straight for Children's Mercy to give it to the radiologists there. The have all of Carson's comparison scans, so we wanted them to take a look as well as the radiologists at KU Med. They wanted to also get a urine sample while we were there to check his HVA VMA levels again. We got out of there in about an hour or so and headed for home. We hope to have some results before the end of the week, but know we will probably have to wait till Dr. Max consults with the other docs before we hear anything.

It was a long two days, but we are very thankful we don't have to have 3 long days! Now we just wait for some good news, it's about time for that don't you think?

Tuesday, December 28, 2004 8:18 PM CST

Today was another long one, but things went rather smoothly. We were a little nervous going to a different hospital and not knowing how they would handle a 9 month old. Other than some rude admissions people, everyone at KU was very good with Carson. The first thing we had to do was get his port accessed for the injection which is always scary when we are outside of the oncology unit. The IV therapist hit it on the first try though without a lot of screaming from Carson. Then he got his injection and we walked around the hospital for 2 1/2 hours until we had to be back to meet with the anesthesiologist. We had Carson's anesthesia records sent over from children's so they would know how much anesthesia Carson got for his scans there. He had one hungry screaming fit for about 15 minutes, but his hunger pain must have passed because he quit screaming and started playing again right before they put him out. Then we headed over to Nuclear Medicine right on time. They had a problem with the scanner in the middle of his exam so it ended up taking two hours instead of one, but everything came out so it was worth the wait. He had to go back to recovery to wake him up and we met up with him about 6:00. He was already smiling and grabbing at the nurses when we came in so he evidently didn't miss us much! After paying 5 bucks to park a stinkin car, we headed for home again till tomorrow morning. We have to be there at 10:00 a.m. for part II.

Tuesday, December 21, 2004 11:09 AM CST

Hi everyone! It looks like we won't know anything more about Carson's situation before Xmas. As we were walking our the door to go to Children's Mercy Hospital, we quickly decided to call Nuclear Medicine in the radiology dept to ask if needed to put numbing cream on Carson's port. When we called, the nuclear medicine tech told us that they just ran a test run on the machine and it failed!! They need to call out a guy who specializes in fixing these machines. So our exam is cancelled for this week since it is a 3-day scan. She said she doubts we get in next week too because the anesthesiologists will be short staffed because of the holiday season. We have called the oncology clinic to ask what our plan is and had to leave a message on an answering maching. So, again, we are just WAITING!!

UPDATE: Since we are not wanting to wait, we are going to have this exam done at KU Med Center next Tuesday, Wednesday and Thursday.

Sunday, December 19, 2004 9:54 PM CST

Just a quick note to let everyone know that Carson is scheduled for the MIBG scan on Tuesday, Wednesday and Thursday this week. It is a one-hour exam each day for three days and Carson will need to be sedated each exam. For those that are wondering, the MIBG scan highlights neuroblastoma cells. So, if anything lights up on the scan, we will probably continue chemo. If not, I'm assuming we are done....but who knows!! Unfortunately, because these exams are so close to Xmas, we may not know the results of the exams until after Xmas. I hope I'm wrong, because we are so anxious to know what's next!

Wednesday, December 15, 2004 9:13 PM CST

Our nurse called today and said they are setting up another MIBG scan for Carson next week. This is the 3 day scan that the injection targets neuroblastoma cells. Unfortunately, our nurse called without getting any details for us as to what they are thinking about his future treatments. The only info we were given is that they want to do this test. Very helpful, huh.

Carson is doing well. He is a much different kid now that he's not on chemo. He is alot happier during the days and really takes in the sites when we leave the house. He is really struggling with the sleeping at night still. We were hoping this would improve by now. One night he is going to surprise us and sleep all the way through, I just hope it comes in the next 5 years or so.

Friday, December 10, 2004 9:30 PM CST

We got our phone call about 4:30 today. The x-ray of the femur was normal, so good news there. We still don't know what the abnormality was on the bone scan, but as long as it's not cancer and not causing problems for Carson, we'll just leave it be. The liver biopsy showed that all the cells were benign!!! The primary tumor on the adrenal gland (which was removed) was 95 to 97 percent benign, but 3 to 5 percent of the cells were still cancerous. What does this mean? We don't really know yet. Dr. Max is contacting some other doctors who work with neuroblastoma to see what the best course of action is. We will hopefully find out next week what we are doing. It seems like this is dragging out FOREVER!

Carson continues to do well today. He was happy all day and acting like nothing ever happened this week, just another day in the life of Carson!

Thursday, December 9, 2004 9:20 PM CST

Well, after a long week we've arrived home again! Carson is doing really well and continues to amaze us. He has been constantly smiling all day as well as making all kinds of happy noises. We have to stay on top of the pain medication, but other than that he is a pretty happy boy for having such a major surgery just 3 days ago. He has even rolled on his belly twice since we've been home. I think they were both accidents, and he hasn't done it since for obvious reasons. The incision is looking much much better already. It's amazing how quickly it started healing. Even the day after surgery it was improving. They put sutures inside, and glued the outside skin together so there are no sutures to remove and the incision heals much quicker. He acts like it doesn't bother him at all.

We are definitely glad to be back to our own beds tonight. The first night after surgery, Carson was too weak to even cry, but he would wake up wimpering every 30 minutes or so, until he knew we were there. After he saw us and we touched him he would be right back to sleep until we tried sleeping and then he would wimper again. The day after, the nurses started helping us hold him and then he wouldn't let us put him down. The farthest distance between any one of us and Carson was comparable to the length of a hair on a gnat's butt! Between me, Kristi, and the grandparents Toews, we held him about 30 straight hours. We took turns in the recliner at night. After removing all his IV's and other monitors, he pepped up and didn't require us to be within inches all of the time. He still wasn't too fond of sleeping in his crib last night, so I got to man the recliner again while he slept with Kristi in the twin size bed they provide for parents.

Still no word on the pathology of the tumors yet. We are really hoping to find out tomorrow so we don't have to go into the weekend wondering. He also had the x-ray done on his leg yesterday, but no results have been given to us on that one either. We are still hoping for the best, but are prepared for other news as well. Thanks to everyone for all your continued support and prayers. Since we didn't have internet access this time, Kristi's mom called and updated us on everybody's posts in the guestbook each night.

Hopefully we'll have more good news to report soon!

Wednesday, December 8, 2004 6:36 PM CST

This is Kristi's mom. Kristi and Matt don't have access to a computer so I will be updating you today. Carson's little body is doing a great job of healing. He slept a lot the evening after the surgery and the next day. He would wake up periodically to make sure Mommy and Daddy were still there. Last night he passed gas and had a bowel movement, so he was allowed to have breast milk. That really made him happy. He wants held constantly, so they have been taking turns holding him. The hospital was nice enough to move in a recliner so they could hold him through the night. Changing positions was a challenge with all the tubes. Today when they removed the catheter, epedural, and fluid IV's, he was a much happier baby. Kristi said he changed immediately from a fussy baby to a happy cooing baby the minute everything was removed. I know I would be fussy too until they were removed. They tell me his incision is looking really good. And, they will all be going home tomorrow!!!! Brutus(aka...pumpty pump,bumper,butch), the cat, will be going home this weekend.

Monday, December 6, 2004 10:28 PM CST

Well, we are one step closer to the end of cancer, we just don’t know if we are through with chemo or not.

Surgery went much better than expected. His surgery lasted about 2 hours. During that time, they removed the right adrenal gland (where the primary tumor was located), biopsied the liver and did a bone marrow aspiration.

The surgeon originally told us that Carson would need the NG tube (through nose) for a few days after surgery and he wouldn’t be able to eat until it came out. Well, because the primary tumor was easily removed without moving around other organs, they went ahead and removed the NG tube after surgery. However, he won’t be able to eat until tomorrow sometime.

The surgeon also told us that the liver still had lots of tumors in it, but the pathologist will tell us for sure if they are cancerous or not. His incision is very large. It starts on his right side and extends across his stomach to about the level of his left nipple. Poor Guy! He won’t want to be on his belly for quite awhile, and he was getting so close to crawling.

Anesthesia placed an epidural line to control his pain. He also had a catheter put in during surgery, which will stay in until the epidural comes out. He also has several other tubes going in and out of his body, so there is no safe way to hold him at this point.

Overall, the day went smoothly, but we still have some long days ahead of us.

Saturday, December 4, 2004 5:23 PM CST

We are getting pretty nervous about Carson's surgery on Monday. The surgeon is expecting it will take about 3 1/2 hours. Our surgery is scheduled for 10:30am on Monday morning. Of course, surgery is never on time, so you never really know when you'll get in. The surgeon will be removing Carson's primary tumor on his right adrenal gland as well as removing the right adrenal gland. He will also look at the liver and biopsy the parts that look like abnormal tissue. The MRI of the liver showed a normal liver with no cancerous tumors, but the CT showed abnormal tissue. Neuroblastoma tumors tend to change to benign tumors with chemotherapy so they could be benign tumors. Or the abnormal tissue could be scar tissue.

Our oncologist will also do another bone marrow aspiration during surgery. She did one on Monday and it came back clear, but the lab was wanting her to obtain more liquid.

If you have left a message on our machine and we haven't called you back, READ HERE: Matt and I just realized yesterday that our answering maching is not working. We haven't had a message in quite some time, but never thought anything of it. It allows the caller to leave a message, but doesn't ever record the message. We thought we should let you all know in case you left a message and were wondering why we never called you back.

Wednesday, December 1, 2004 9:59 PM CST

Carson woke up fussy this morning. Kristi tried everything to tame him, but didn't have much luck till she tried some pain medication. Of course that made him sleepy, so he got in a nap and woke up feeling much better. We are assuming he is in pain from the bone marrow aspiration. We've heard that is VERY painful. Carson hasn't really told us it's that bad though.

Today we received more encouraging news! Dr. Max called this afternoon to let us know that the bone marrow that she was able to aspirate came back cancer free! She is still going to try to get more of a sample on Monday in surgery, but this was a positive step. She went on to say she discussed the bone scan with the radiologist and she thought it was very unlikely that the spot on the femur was neuroblastoma. We won't know of course until we do more tests, but she seemed confident we can relax about it. The spot is right on the growth plate of the femur and she thought it was possibly a stress fracture. Why not, heck if Carson can fight everything else, why not throw a cracked bone in the mix! With his body fighting the cancer and being so weak because of the chemo, his bones could be more prone to something like this. Bummer, but much better than cancer! We won't know for sure though until next week. We are still on schedule for that cancer free Christmas we are hoping for!

Tuesday, November 30, 2004 5:23 PM CST

5:23pm update
Our day actually went smoothly today. We were really expecting this to be an awful day. First of all, Carson actually drank 4 oz. of contrast mixed with apple juice and water before bed last night. He drank another 2 oz this morning and the radiologist said that was good enough! Hooray….we didn’t have to shove an NG tube up his nose!!

So, then we proceeded on with the bone scan injection, a visit with anesthesia about the sedation process, MRI, CT, bone scan and bone marrow aspiration. We arrived at 7:30am and left at 3:00pm.

While Carson was sedated for scans, our oncologist caught up with us in the cafeteria and said that so far, the scans are looking good. Although she has not spoken with the surgeon yet, she believes the primary tumor on the right adrenal gland will be easy to remove b/c it is in a good location and is small. The liver has shrunk considerably, but it still isn’t “homogeneous”. However, we don’t know if it is scar tissue, neuroblastoma tumors, or benign tumors. Neuroblastoma can easily turn into benign tumors. We won’t know this until after they biopsy the liver in surgery. All of his skin tumors are gone, which is great b/c I guess he had “too many to count” before we began chemo. We were also thrilled to find out that the tumor below his spinal cord is also gone!!

The tumor markers in Carson’s urine are also down after the fourth round of chemo, however they are still not in the normal range. VMA is 43.5 (normal is 32) and HVA is 27 (normal is 18.8). Our oncologist told us not to be too concerned about this because the benign form of neuroblastoma tumors also sends off high VMA and HVA levels.

We won’t know the official results of the scans for a couple of days. And, of course, the liver biopsy will determine whether or not we continue chemotherapy. All in all, today went much smoother than we ever expected and we are so glad we made it through today.

7:45pm UPDATE:: Our nurse just called us and told us there was some uptake in Carson's femur bone on the bone scan. This doesn't make any sense, because the bone scan was clear before we started chemo. So, how could cancer grow on the femur bone when all other tumors have shrunk?? They are wanting to take an Xray of Carson's leg now to compare it to the bone scan. It still could be nothing. Sometimes bones show uptake when they are growing. So let's pray it is something simple like that.

Sunday, November 28, 2004 9:34 PM CST

Hope you all had a great Thanksgiving! We spent the past four days in Salina. It felt so good getting away for awhile. Carson received tons of attention from his grandparents and stayed busy the whole four days. It was a big change from staying at home with boring mom. Next time we are in Salina will either be Christmas or next spring, but he should be cancer free whenever that time is!

Matt and I are not looking forward to tomorrow night or Tuesday. Tomorrow night we have to try to give him four ounces of contrast for the CT scan on Tuesday. Then, we have to give him another four ounces on Tuesday morning. Last time, he refused and he ended up with an NG tube so we are hoping he will do better this time. NG tubes are not fun for Carson or us!

Monday, November 22, 2004 8:48 PM CST

Today we had two appointments at Children’s Mercy: Oncology at 9:00am and cardiology at 10:00am. Our oncologist is still very pleased with Carson’s response to chemotherapy. She is still very optimistic that Carson will be cancer-free after his Dec. 6th surgery and won’t need any more chemo. However, we won’t know for sure until we get the pathology report after surgery. If we do have to do more chemo, we will need to do four more rounds, which will last until the beginning of March. So we are really hoping and praying to be done with treatments. We are getting so nervous for the radiology exams on Nov. 30th and surgery on Dec. 6th.

Our cardiology appointment was fast!! After they placed the electrodes on Carson’s belly, chest and arms, the EKG only lasted a few seconds. Then he had an echocardiogram and it only last about 5 minutes. Although we have not heard the results of either test, we are assuming they are fine. We figured if they found problems with the heart, they would have scanned him longer or had a cardiologist come in to look at him. In case you are wondering why we had this done, it is just a part of Carson’s protocol. Sometimes chemo drugs can damage the heart. He had excellent heart scans before we started chemo, so they are not anticipating any problems.

Last, I would like to say "thank you" to the staff at Lincoln and Eisenhower elementary schools for working so hard on a wonderful fundraiser for our family. We are so appreciative to the Ottawa community and schools for making this fundraiser a great success!!

One more thing…
Please, please pray for Eliza Mae and her family. http://www2.caringbridge.org/ks/elizamae/ She is also from Lawrence and has been up at the Mayo Clinic seeking treatment since July. She listed her prayer requests in her last paragraph.

Everyone have a good Thanksgiving. We are going to enjoy our Thanksgiving in Salina. It will be the first time we have been there since before Carson was diagnosed. We definitely have a lot of things to be thankful for!

Kristi

Sunday, November 21, 2004 9:08 PM CST

Carson had a good weekend. He napped well all weekend long for the first time in forever! Nights are still an adventure, but if he can take good naps, we'll take it! We are heading for the hospital again bright and early tomorrow. We have a checkup scheduled in oncology, and then we go to cardiology from there. He is having and echocardiogram and EKG to make sure the chemo hasn't done any damage to his heart. He's had enough trouble, so we are voting against any heart damage. He's had enough problems for now. Dad gets to stay in KC when we are done to see the Chiefs whoop up on the Patriots. Caron's a bit ticked he's not going, but he's still flying high over the win over Mizzou on Saturday. He also gets a kick over babbling "K-State has never gone to a bowl in my lifetime!"


Well, say a prayer that tomorrrow goes well!

Thursday, November 18, 2004 9:28 PM CST

Carson's fever is gone and he is feeling much better. His second tooth finally broke through, so we are assuming that's what caused the fever. He had his labs drawn again today, and they had actually gone down since Monday. (except for the platelets of course) This is the first time the labs have dipped this late in the 2nd week after chemo. We don't know why for sure. The oncology office told us we could take him out anyway though. I don't know how much sense that makes, but as long as they say it's o.k. I guess we have to listen.

We are just playing the waiting game for the tests. We are nervous already and ready to get them over with. Getting in a hurry doesn't ever seem to help, but it sure would be nice to know what the next 6 months will hold!

Tuesday, November 16, 2004 9:10 PM CST

Carson woke up with a fever this morning so we were glad we were going to the hospital anyway. It was a little bit over 100, but we were concerned because this is the first time he has ran a fever since we started chemo. They looked him over and decided it was nothing to be concerned with yet. If it get's above 101.5, we have make an emergency trip back to KC and he will be admitted to the hospital. Hopefully it won't come to that! His fever has been coming and going all day, mostly around 100 or so. We are thinking (or hoping)it may be because he is teething.

The platelet transfusion went well. We arrived at 7:30 and we were gone again by 8:30! That had to be an olympic record time for children's mercy. His ANC is back up to around 1000, so he should be able to leave the house at will if his fever will stay down. Hopefully this is the last time ever that his ANC will be below 1000.....meaning no more chemo!

Monday, November 15, 2004 9:17 PM CST

Well, we were right about the platelets being low. Last Monday they were at 70,000, and today they were at 4,000. Anyone below 30,000 gets a transfusion, so it's back to KC tomorrow for a platelet transfusion. We have an appointment at 7:30, so it will be an early morning. The platelets are responsible for clotting blood. Since his count is so low, pretty much any little bump gives him a bruise. His legs look pretty rough from all his shots, and from bumping them with toys. Last time he got platelets, his bruises healed up pretty fast so we are hoping for the same tomorrow. Hopefully, we will just get the platelets, and be out of there. No more strange viruses,or other problems!

Sunday, November 14, 2004 10:05 PM CST

Not much new to add, but Carson is working on another tooth. Friday night he woke up about midnight and screamed unconsolably for about 30 minutes. We are guessing it must be the tooth.

He is starting to get bruises all over, so we are guessing a platelet transfusion may be in the near future. He has bruises on his legs from the last 5 or so shots I've given. He had several scratches that all turned into bruises just today. He will get blood drawn again tomorrow, so we should find out Tuesday if we have to get platelets. Otherwise, he's had a decent weekend. He's still not feeling normal, but he's doing pretty good.

Wednesday, November 10, 2004 8:53 PM CST

For those of you who read this entry earlier, I have changed it a bit. Please re-read. Matt wrote the entry last night and I don't think he explained things well enough. (Of course, I ALWAYS explain things better!) :)

Today was another fun day at the hospital. We arrived at the clinic this morning to find out Carson has surgery scheduled for December 6. The surgery is to remove any residual tumor/scar tissue that is operable. They told us they went ahead and scheduled surgery because it is hard to get surgeries scheduled during the Xmas season (with all of the surgeons taking time off).

They did tell us the VMA and HVA (neuroblastoma indicators in his urine) levels are still decreasing, but not quite normal yet. The VMA has gone from 1700 down to 64 (normal is 0 -32), and the HVA has gone from 1500 down to 54 (Normal is 0 -18.8). This urine test was taken BEFORE the last chemo. So we are hoping these numbers will be in the normal range after this fourth round of chemo. (Pray, pray)

They then went on to tell us he tested positive for VRE (Vancomycin Resistant Enterococcus). VRE refers to a type of bacteria that lives in the intestines which had become resistant to the most potent antibiotic, vancomycin. Peole who carry VRE rarely develop an infection due to this germ. So hopefully this won't be a big deal. This is some kind of virus that he most likely caught at the hospital. He now has to be in contact isolation while he is in the hospital. So every time someone entered his room, they had to dress up in a very fashionable alien suit and gloves. They are only concerned about the VRE virus being spread to other immune deficient individuals (such as cancer patients, HIV patients, etc.) He can still have contact with people with healthy immune systems because healthy adults/kids do not have a problem with this. Once Carson's immune system becomes healthier, this VRE bacteria will evenually be replaced by normal bacteria. (I hope that explains things better.)

Otherwise, the blood transfusion went well. They didn't have any trouble accessing the port this time, hooray! Carson really has a lot of color to him again and is feeling pretty good. He has been doing a lot of talking tonight and didn't even know when I gave him his shot!

Tuesday, November 9, 2004 9:24 PM CST

We got the results back from Carson's labwork yesterday and his hemoglobin is down to 7.1 so we have to head back to Kansas City first thing in the morning for another blood transfusion. He is really looking pale, so we knew this one was coming. It should pep him up a bit, so we are looking forward to gettting it over with. He's been a grump today. His ANC is still fairly high, so we don't have to worry as much about him catching something while we are at the hospital. The actual infusion of the blood takes about 4 hours, so it will be another full day at the hospital by the time they access his port, type his blood, and do everything else. Should be nothing but fun!

Thursday, November 4, 2004 9:35 PM CST

We are home again. Carson finished his fourth (and hopefully last) round of chemotherapy. Except for the incident the first day of chemo, everything went smoothly. He didn’t start feeling any effects of the chemotherapy until we arrived home about 2:00 today. He became inconsolably fussy, but after a dose of benedryl he felt much better. So he must have been nauseated. Now, for the next couple of weeks Carson is confined to the house.

Here is the plan now: On November 22nd, Carson is scheduled to have an echocardiogram and an EKG to check and see if his heart is still functioning properly after chemotherapy. On November 30th, Carson is scheduled for a MRI, CT, bone scan and bone marrow aspiration. If his cancer is gone, then we are obviously done. If there is a small amount of tumor left, they will surgically remove it. If they can’t surgically remove the tumor with clear margins, then we will continue to do 4 more rounds of chemotherapy. After meeting with our oncologist on Tuesday, she was very pleased with Carson’s progress. In fact, she couldn’t feel his liver AT ALL. Remember that two months ago his liver was clear down in his pelvis….so this is great news. We are hoping and praying that we are done with chemotherapy....and that his only surgery will be to remove his port.

Carson wants type too! r5grgffuiodfdfidfjoijdij9ou vc r tyb jo 5j5 dfojouifuu dfl yby

Tuesday, November 2, 2004 10:25 PM CST

Today was the typical LONG day at the hospital. We left home about 6:30 this morning and arrived at the oncology clinic to see Dr Max. She seemed pleased with his progress again today. She wasn't able to feel his liver anymore which was very encouraging. She said Carson will get a bone scan, CT, and another bone marrow aspiration on November 30. They were hoping to get it done before thanksgiving, but that didn't work out with anesthesia. After our visit with Dr. Max we headed up to our room. Carson has been strugling with constipation (side effect of chemo) and was really having pains today. They gave him a suppository which did help some. Then they started chemo and we had another mishap with the needle. His tubing got caught up as he was lifted and pulled the needle out of the port. Of course he instantly started screaming in pain and we got the chemo stopped immediately. Very little of the chemo extravisated so no major harm was done. Of course, they then had trouble reaccessing the port and had to stick him 3 more times. Obviously, he didn't take that to well, and really wore himself out screaming. After all that was over, he got a nice nap before getting an oral laxative. It didn't take long and he was loading diapers left and right! He was feeling much better, smiling and playing again by the time I left tonight.

We weren't lucky enough to get a room with a computer, so this will be the last update till we get home again. I'm heading straight for the hospital after work tomorrow so I won't be able to get to a computer. They are talking about discharging us on Thursday so we'll probably update you all then. Please pray the next few days go a little smoother than this one!

Sunday, October 31, 2004 10:00 PM CST

Carson had a great weekend. He enjoyed socializing with visitors this weekend. However, he was not too enthused about wearing a halloween outfit for Halloween. But I have to admit, the design of the outfit was terrible. Not comfortable at all for a baby. I've added a picture to the photo album of Carson in his outfit.

Carson will get his 4th (and hopefully last) chemo treatment on Tuesday, Wednesday and Thursday this week. We are hoping to get a room with a computer, so we can keep all of you up to date. However, if we don't get a computer in our room, we won't be posting again until Friday.

Tuesday, October 26, 2004 9:33 PM CDT

Carson's lab results are in! His blood counts are up, which means his immune system is up and running again. Yeah! This means we can get out of the house again, but we still need to do our best to stay away from sick people. We actually made it through this chemo treatment without a blood or platelet transfusion. That is a first for us!

Hope everyone has a happy Halloween! Carson is going to be a bumble bee. Then two days later (November 2nd) he'll be back in the hospital for another 3-day chemo treatment...and hopefully his last.

Monday, October 25, 2004 10:01 PM CDT

Carson continues to be fussy, though he has improved some since last week. We've found definate proof of his first tooth trying to make it into his mouth, so I'm sure that acounts for alot of the fussiness. We are hoping the tooth can come cut all the way through before we have to start chemo next week again. We've heard they can be the source of some nasty infections when his counts are low.

His counts on Friday had actually gone up a bit without a transfusion! We haven't heard back yet on today's counts, but we are hoping they continue to go up so Kristi can get out of the house a bit this week. Home health will return again on Thursday.

Oh, Carson also wanted to relay the message to everybody, and especially bronco fans that the season is just beginning. He says the chiefs are going on a tear and there's no stopping them. I don't know what this means for cancer, but I did catch him doing the tomahawk chop in his sleep last night!

Wednesday, October 20, 2004 8:23 PM CDT

Home health came to draw blood today (by surprise), but we haven't gotten the results back yet. We are assuming he doesn't need a blood transfusion yet since we haven't gotten a phone call. They had more trouble getting blood from his port, but eventually they were successful. He continues to feel crappy. He is still moaning and has started to act nauseated again. We are almost looking forward to a transfusion in hopes that he will feel better again. He is coughing and sneezing a little bit, so he may be catching a cold. He was happy part of the day at least and smiling for a portion of it. Home health will be back again on Friday for another blood draw.

Monday, October 18, 2004 8:02 PM CDT

Well, our week long honeymoon of Carson being in a good mood has officially ended! Carson started fussing and feeling rotten again today. He has latched on to mom for security again and won't let her out of his sight! He continually has been whining since last night and is gnawing on everything. We are wondering if he is teething or feeling rotten from the chemo again. Everything is so much more complicated when he is going through all the normal baby steps along with all the cancer treatment. We don't know what the cries mean anymore.

Yesterday we accidently took his shots out of the refrigerator and didn't put them back in. We called the pharmacy today and found out they are still o.k. if they weren't out of the fridge more than 24 hours. Whew! That was another $1,000 we didn't need to spend!

Sunday, October 17, 2004 9:48 PM CDT

We have been home from the hospital since Friday afternoon and Carson is still doing great. He laughs and smiles most of the time each and every day. He is also sleeping better lately, but I suspect that will change as his blood counts go down (which will be the lowest by the end of this week).

Just as before, Carson is to stay away from public places and sick people. So except for daily walks outside, he will basically be at home until his blood counts are considered good again. His blood counts should be good for Halloween!!

Carson's next chemotherapy treatment (and hopefully last) is scheduled for November 2nd. That will also be a 3-day hospital stay.

Thursday October 14

Carson had another good day today. He is still not having any adverse effects from this round of chemo. He has been wound up at bedtime the last two nights, but that's a lot better than being sick! The doctors told us today that Carson's liver may still be enlarged after we are done with chemo. Since the liver will be damaged from all the tumors in it, it may be enlarged while it works to repair itself. They also said there may still be tumors when we are finished, but they will not have any live cells in them. Eventually they will go away. They wouldn't commit as to whether or not we will have to do more than the 4 rounds yet, but they think Carson is where he should be after his first two. They all continue to sound positive.

Carson will get chemo again in the morning and we are planning on being back in Lawrence tomorrow evening. Thanks for keeping us in your prayers and for all the uplifting messages! We'll continue to keep you updated.

Wednesday, October 13, 2004 9:17 PM CDT

Today was a much better day. Carson slept well last night (with the aid of codeine and benedryl) and so did mom! He woke up this morning feeling no effects of the chemo that got loose in his skin. They reaccessed the port this morning with the correct needle and had no problems. They went ahead and gave him today's chemo in the morning. He hasn't shown any side effects so far, not even a rash. His appetite is decreasing, but that is a combination of the chemo and all the fluids he gets through his IV. He's still getting anti-nausea medication, so that may come back again when the medication wears off.

Carson spent most of his day strolling around the floor smiling at everyone. He was feeling pretty good all day and trying to get everyone's attention! We heard there were 6 patients waiting for a room on our floor today, so I guess our wait wasn't as long as some! We lucked out anyway because we ended up in the bone marrow transplant unit and we have a computer in our room again!

We also found out today that we may still get to go home on Friday as we originally planned. They will give him his chemo in the mornings, and if he's doing well Friday night we will be discharged. There is definately no place like home after spending a few nights sleeping here!

Tuesday, October 12, 2004 8:12 PM CDT

What a long day! We had an 8:00am appointment with Children's Mercy to admit Carson for chemotherapy. Well, believe it or not, all 25 rooms on the oncology floor were taken. Three kids were suppose to be discharged today, but all three were not discharge until the end of the day. (One poor girl was needing to be discharged from the oncology floor, but the nurses couldn't get a hold of any of her family members to come pick her up!! How awful!) Therefore, we did not get into a room until 5:00pm. So, we sat in the infusion room all day while Carson got IV fluids.

They started Carson's chemotherapy shortly before our room was ready for us. About 5 minutes after we arrived in our room, Carson started screaming inconsolably. We went and found a nurse to ask if there could be something wrong with the chemotherapy. The nurse came in, checked Carson's port and quickly shut off the chemotherapy drug going into the port. Apparantly, the needle going into the port was loose and the chemo was going into his tissue and not the port! His skin was swollen around the port area (under the arm). After taking the needle out, we realized the wrong size needle had been put in and slipped out more easily because it was not long enough. My poor baby was trying to tell me that, but it just took us awhile to figure out what his cry meant.

The doctor was immediately called in. After examining Carson, he reassured us that Carson will be okay. Luckily, the kind of drug he was getting at the time is an irratant so Carson is in a lot of pain, but there won't be any long term damage to the tissue. However, they decided to wait to continue chemotherapy until tomorrow. We have to keep a warm compress on this port site to help that area absorb the drug. They are going to give his port area a break until then. That means today was pretty much a wasted day and we will be here one more day than expected. Boo hoo! What a long day!

Monday, October 11, 2004 9:17 PM CDT

We haven't had much to report in the last week. Carson has been in good spirits and had the happiest weekend he's had since this all started. He's fussy again tonight, but we figure he's probably sensing that we are a bit nervous to go back and start another round of chemo. I should be home tomorrow night, so I'll try to update you all on how he does tomorrow. Carson will be at the hospital till Friday. Here we go again!

Tuesday, October 5, 2004 11:22 AM CDT

As some of you read earlier today, Carson's counts are back up again and should stay that way until chemo again next Tuesday. We knew they would be coming up again soon, but probably grew a little more rapid than normal after the chiefs game last night. Carson was pretty fired up after seeing his first chiefs win. He was so pumped he couldn't calm down enough to go to sleep even though mom and dad were tired. Born football fan I guess.

Carson figured out his sippy cup for the first time today. He really gets a kick out of it. He doesn't drink much yet, just smiles when he puts the cup in his mouth. It was definately rather humerous.

Next Tuesday we'll be heading back to the hospital for a 4 day stay for the next round of chemo. We may or may not get a ct at that time to determine how he is progressing. We're not sure we want to put him through another day of NPO and sedation just to see how well it's shrinking. He will have at least 2 more rounds of chemo regardless of what it shows. That's next week though, right now Carson is concentrating on a chiefs win and a KU win over the cats this weekend!

Friday, October 1, 2004 9:39 PM CDT

The trip to the hospital today went well. They accessed Carson's port with no problem. We don't know what went wrong on Thursday, but we are just relieved that the port still works. After drawing blood, they decided he needed platelets and blood. The platlets only take about 15 minutes to infuse, but the blood takes about 4 hours, so it was another full day at the hospital. Of course that meant leaving in rush hour traffic! We didn't realize how pale Carson was looking until he got his fresh blood. All of the nurses noticed, but it was also obvious to us when he started getting his color back. He has been full of energy tonight as he always feels better after the blood transfusions. The rest of his blood components were not as low as they were after the first chemo, so his immune system is still somewhat working. It should beeven stronger after getting the new blood. The clinic called the homehealth agency and agreed for them to come to our house on Monday instead of us having to go back to KC. Our usual nurse should be back and hopefully we won't have problems accessing the port again!

Thursday, September 30, 2004 9:11 PM CDT

Well, it looks like we are heading back to the hospital again tomorrow. Home Healthcare came out today to draw blood, but they were unable to draw anything out of Carson's port. That means another trip to KC tomorrow to get blood drawn and figure out what happened to the port. We are praying that they just didn't know how to access it properly and not that it has malfunctioned. That would mean another surgery to remove this port and put in another.

The oncology clinic called this morning and told us they had results in from a urine test they did last time we were there. They said that the HVA and VMA(these indicate neuroblastoma) levels have significantly gone down! When we first found out about Carson's cancer, these levels were approx. 1700 and they are down to approx. 300 now! We do have evidence that the chemo is working! His hair is also getting thinner by the day. He has a pretty shiny forhead now, but he still has a big clump hanging on in back! He has kept much of his hair longer than we were expecting though.

He has bruised his two fingers he sucks on again, so we are guessing that his platelets are low again. His levels should be about bottomed out right now and he is being pretty fussy.

We'll update you with what happens tomorrow as soon as we can!

Monday, September 27, 2004

We had a 9:00am appointment at the oncology clinic at Children’s Mercy this morning. Carson’s weight is up to 17.7 lbs. When we first went into the hospital in mid-August, he weighed 18 lbs 10 oz. With all of the IV fluids and when his belly was the biggest, he weighed 19.97 lbs. He is definitely a smaller baby and I’m hoping that is due to the tumor decreasing in size.

Anyway, his appointment was quick this morning. We were actually home in Lawrence by noon! Carson had labs drawn again; everything was fine, but his hemoglobin was 8. They do blood transfusions for hemoglobin levels under 8, and they expect his numbers will go down more in the next couple of days. So after his blood in drawn on Thursday, we’ll probably need another blood transfusion. That is just what happens when you are on chemotherapy. They expect it.

Last Thursday we started doing tummy time again with Carson. (It had been a long time due to his big belly and tenderness.) He is FINALLY enjoying tummy time and has quickly figured out how to roll over. He is a little behind on his gross motor skills because of that big ‘ol liver, but I’m hoping he will quickly catch up now.

Sunday, September 26, 2004 8:06 PM CDT

Just to keep you all updated, nothing exciting has happened this weekend. Carson's sleep at night is getting shorter again. His blood counts are probably starting to bottom out from the last chemo, so that probably accounts for the bad sleeping. The chiefs certainly aren't helping either. We head back to KC tomorrow for another clinic visit and to get blood drawn. It should just be a one day visit.

Thursday, September 23, 2004 7:45 PM CDT

Last night was our second good one in a row! Carson only woke up at 2:30, 4:45, and then 8:00. I don't know if this is going to keep up, but I'm hoping this is a new trend. He woke up fussy, so Kristi gave him some benedryl and he calmed down a bit. They are having us give him the benedryl for the nausea. He has been happy most of the rest of the day, but he is fussy again tonight so we are getting ready to pull out the benedryl again. We are back to giving him shots at night as well. Now that we are used to giving them, they aren't as bad. Carson's not a big fan of them, but he gets over it pretty quickly. His appetite has gone down a bit today, but he is still eating some. He ate enough to get his first thyroid pill down this morning without incident.

We forgot to mention yesterday that we got to see Ellie Rose again! She is still camped out on the floor, but they are now hoping she can be discharged next week. We had a wonderful time in the playroom taking pictures and letting Ellie "pet" Carson. She was very excited to have a playmate, but Carson wasn't feeling to active so he let Ellie do the playing!

Wednesday, September 22, 2004 8:54 PM CDT

Our Tuesday morning started off with a bang. As we were ready to head out of the house at 6:00 a.m., the doorbell rang and the police were there to tell us someone had decided to play a little "mailbox baseball" and chose our mailbox to play with. Fortunately, whoever was batting must have played for the royals and only made partial contact with the mailbox so it was still standing and servicable, although it looks rather bad.

We got to the oncology clinic and went through the routine there before admitting us to the hospital. There we found out Carson had spots on the bone scan that looked like the cancer had spread to several spots on his skull. Because of this, his staging would be different and he would be back into the intermediate risk category again. We had to go through signing papers to get him out of the low risk and back into the intermediate risk category. They said there was still a remote possibilty that this was a "false-positive" and to be sure we would need to do a CT of his head the next day. After we got to our room Carson napped for 3 hours! I don't know what the deal was, but that was the best nap he's had in months. We had to delay the start of chemo because we didn't want to wake him! He went through the 3 hour chemo without any major problems. In the late evening he started gagging and acting like he was nauseated so he got some anti-nausea meds and he almost immediately felt better. He also had one of the better nights of sleep he's had in a long time. He seemed to get into a deep sleep and only woke up when the nurses came in. He even went back to sleep on his own a couple of times!

We were supposed to have a CT of his head in the morning so it was another day of nothing to eat starting at 5:00 a.m. At about noon we went to CT where we found out they wanted to try to scan him without sedating him. I don't know how many 6 month olds can fall asleep on a table after being starved for 8 hours, but Carson is not one of them. They then proceeded to tell us Anesthesia had not even been contacted yet and they didn't know if it could even be done today! We were a little ticked because Carson hadn't been allowed to eat for 8 hours and anesthesia knew nothing about him! Not to mention we were waiting to get the CT scan done so we could be discharged. Anyway, we finally got the scan done a couple hours later and found out the cancer has not spread to his skull and Carson is back in the low risk category again! Good news, but what a roller-coaster.

In unrelated news, amongst all the testing he has had they have discovered his thyroid is not working properly. He now has to go on thyroid medication for hypothyroidism and we will be seeing an endocrinologist next month to discuss this problem. It supposedly has nothing to do with the cancer.

We are back home tonight and Carson is in a really good mood and seems to be feeling fine. He's making a lot of happy noises and is full of smiles!

Sunday, September 19, 2004 9:00 PM CDT

Carson had another rough day accepting the chiefs game. I tried taking his picture tonight and he threw off his chiefs helmet and proceeded to cry. I think he may take these losses harder than dad.

There has been very little action around here the past few days. Carson continues to wake up throughout the night. He acts very happy during the days now. We think he is really feeling better and loves being more flexible in his tummy. We are not wanting to give him more chemo already because he is acting so happy and feeling so good right now. We know it has to be done and will be the best in the long run. His "pooing" has slowed considerably lately, we are hoping this means his intestines have more room to stock up than they used to. One more day then it's back to the hospital. Boooo!

Sunday, September 19, 2004 9:00 PM CDT

Carson had another rough day accepting the chiefs game. I tried taking his picture tonight and he threw off his chiefs helmet and proceeded to cry. I think he make take these losses harder than dad.

There has been very little action around here the past few days. Carson continues to wake up throughout the night. He acts very happy during the days now. We think he is really feeling better and loves being more flexible in his tummy. We are not wanting to give him more chemo already because he is acting so happy and feeling so good right now. We know it has to be done and will be the best in the long run. His "pooing" has slowed considerably lately, we are hoping this means his intestines have more room to stock up than they used to. One more day then it's back to the hospital. Boooo!

Wednesday, September 15, 2004 10:32 PM CDT

Carson and I went to a couple of stores today and had a great time. It has been over a month since Carson has been to a store. He smiled and talked a lot the whole time.

Last night was another long night. Carson woke up every hour of the night. I can't believe he went from an excellent sleeper at a very young age to a terrible sleeper. The doctors think it was the hospital that messed up his sleeping...since he couldn't eat food during the day for testing and because they woke him up several times each night to check his vital signs, take blood, change IV fluid, etc. However, I think that either the cancer itself or the chemotherapy is affecting his sleep. The poor child has to be sleep deprived. Tonight, Carson fell asleep about 10:00 and already woke up screaming at 10:10. He is back asleep again in his crib. We'll see how tonight goes!

Tuesday, September 14, 2004 10:05 PM CDT

Carson's lab results are in! His immune system is back up to normal again! Yeah! The nurse practitioner ordered us to get out of the house, go shopping, whatever....as long as we stay away from "snotty kids", as she put it. I definitely think we will go shopping tomorrow.

We scheduled his next chemo treatment for next Tuesday (21st). It will be a one-day chemo, but we will stay the night at the hospital.

Oh, and good news: Last night, Carson slept from 12:00-3:00. Then, 3:15 to 8:15am!!! (He usually wakes up every 30 minutes until midnight for some reason.) This is the most sleep I've had since before we went to the hospital. He was a really good baby today and I think it was because he slept so well!

Monday, September 13, 2004 8:53 PM CDT

Carson was a little down today after the chiefs game last night, but he was himself again by the afternoon. After I explained to him it was only one game, he felt a little better.

He gave us a few hours of sleep last night! (12-2:45) Mom is putting Carson in the same sleeping oufit tonight in hopes of duplicating this feat! He still is coughing more at night than in the day, but he is starting to sleep through some of it. The cough is slowly getting better, but still has a long way to go. The home health agency came by today and listened to his lungs. The nurse said he sounded clear. She also took blood from him, so we should know if his immune system is rebounding by tomorrow. If his counts are coming back up, we should be on schedule for another chemo treatment next week sometime.

Saturday, September 11, 2004 10:52 PM CDT

Shortly after Carson turned 4 months old, everything started changing (sleeping habits, eating, etc.) and his gross motor skills came to a halt. About this time, he stopped grabbing his feet. Well, yesterday he started grabbing his feet again!!! I think that is a huge sign that his belly is shrinking. And today, he even started putting his feet in his mouth! Yeah! You definitely can't do that with a big 'ol belly. Thank you for the prayers; they are working!!!!

Friday, September 10, 2004 9:18 PM CDT

There isn't much to write today. Carson has developed a cold as a result of having no immune system. He has a runny nose and a nasty cough.

We forgot to mention yesterday that the doctor prescribed Carson some ointment to put on his neck and bottom. He developed a yeast infection in both places...as a result of the chemo. The poor little guy is just miserable and wants to be held all day and all night. He still isn't sleeping more than an hour at a time at night. That is a big change from 6 weeks ago when he was sleeping 9-12 hours straight at night.

The oncologist said his blood counts should be up by next week. Then his immune system will be better too. However, he will get chemo the following week and we'll start all over again.

Hope everyone has a good weekend!
Kristi

Thursday, September 9, 2004 9:37 PM CDT

Our day started early. After having another long night of very frequent wakings, we set off for Children’s Mercy Hospital at 6:00am. We had to be there at 7:15 for the injection for Carson’s bone scan that was scheduled for 11:00. (We were supposed to get this scan done while we were in the hospital. But doctors decided to do the MIBG first and supposedly you have to wait two weeks after the MIBG to get accurate results on a bone scan.) They don’t expect to find anything on the bone scan; it is just protocol that they complete it.

After Carson was injected, we went up to anesthesia to talk with the anesthesiologist that would be sedating Carson for the bone scan. Then we headed to the oncology clinic for labwork. Almost all of his counts had bottomed out. They told us they are so low, he doesn’t have an immune system right now. His platelet level was the most alarming, and he is starting to bruise easily, so they decided to give him a platelet transfusion. Some of the areas that were previously rashes from the chemo have turned into bruises. He has even bruised his two fingers he sucks on for comfort! We actually had to go back to radiology for the bone scan before he could get the platelets, so off we went. We got to eat while they sedated him. He got done around 2:00 and it was back to oncology for the transfusion. We finished there and arrived back in Lawrence at 5:00. He started having some diarrhea tonight, and I think that is making him feel more “crappy” than ususal. They told us this would be a side affect from the chemo. Our friend Ellie from 4 Henson warned us of the explosiveness, and she even donned plastic pants it got so bad! He is still a little drugged up tonight, and we are hoping that will assist in some sleeping.

Thanks again for all the posts in the guestbook, we look forward to reading them several times a day. We are always encouraged when we see all of your well-wishes and prayers!

Tuesday, September 7, 2004 9:17 PM CDT

Last night, Carson went to bed about 9:45pm. He proceeded to wake up at 11:15, 12:15, 1:15 and 2:00. At 2:00, he decided he wanted to get up for good. Smiling, laughing, kicking, he was having a great time as mommy could barely keep her eyes open. After 1 ½ hours of staying awake, he finally fell asleep at 3:30 and slept until 5:30. He ate again and slept until 7:30am. He didn’t wake up this often even in the early months!

After that long night, I decided to call the nurse practitioner at the oncology office to ask if sleeping problems was a side effect of chemo. She said “no”; she thought Carson’s sleeping schedule is just completely messed up from the hospital. Darn! I was hoping for some sleeping medicine. These nights are just getting so long.

Other than that, Carson continues to do well. He is smiling, laughing and talking so much more now. Unfortunately, being on chemo, he is stuck at home for a while. We cannot go to any public places or hang out with groups of other kids. When people come to visit us, we have them wash their hands upon entering our house. Anyone can visit us as long as they are not feeling “under the weather”. We are enjoying daily walks in his stroller though, he just loves being outside.

Monday, September 6, 2004 9:53 PM CDT

There isn’t much more to report. Carson has done so well since we have been home. After going through everything he went through at the hospital, he now has his fingers in his mouth 24/7 for comfort. His “outie” belly button is quickly becoming an “innie” again and his belly appears to be getting softer overall. This is great news!

A special “thank you” goes out to our parents for replacing all of the items in our house that were damaged by the lightning storm. That was one less worry for us to think about.
THANK YOU.

Sunday, September 5, 2004 8:50 PM CDT

Today Carson started to show a little bit more independence. He could actually go several minutes without mom or dad in the room! He is acting almost "normal" again. Over the last few weeks, we have crammed so many medications in him, he now knows when they are coming. Normally, he starts crying and we shoot the medication in his mouth and he involuntarily swallows it. Last night he figured out he can keep his lips sealed and not have to taste anything bad! At 3:00 a.m. we were trying to give him some codeine, and Kristi ended up hosing me down with it while Carson was refusing to open his mouth. It was one of our lighter moments in the last two weeks to say the least!

The chemo has started to affect his skin today. His hands and feet are very red and look like they burn. He hasn't acted like they hurt him at all though. He also has a rash on some of his body from the last chemo. We are wondering what will pop up next.

Friday, September 3, 2004 8:39 PM CDT

We are home and loving it!! Carson appears much happier and healthier at home. However we have created a PROBLEM! After spending every minute of the day with mommy and daddy over the last couple of weeks, he will not let us out of his sight without crying. He also will not let anyone hold him except for mommy or daddy.

Before we left the hospital the pharmacist taught us how to give Carson shots. We give these shots to him daily for the first 10-14 days after chemo to help his blood counts. Matt did the shots the first night and he did is so well, I’m going to let him continue doing it.

Upon dismissal, the hospital set-up a home health care agency to come to our house and draw labs from Carson twice a week. Our next appt at Children’s Mercy is next Thursday.

We truly appreciate everyone’s love, support and prayers. You all have made this experience easier to get through.

P.S. Check out the new photos

Thursday, September 2, 2004 12:39 AM CDT

Just wanted to let you all know that we are heading home today. Our cable modem got damaged from lightening while we were here, so we may not be able to update everyone until we get that replaced. We'll try to get it replaced as soon as possible.
Kristi

Wednesday, September 1, 2004 9:41 PM CDT

Every morning at 4am the nurses draw Carson's blood to check many different levels. This morning his hemoglobin level (red blood cells) was lower than they like, so we did another 4 hour blood transfusion. Now that I've experienced how important blood donations really are, I'm going to make sure I give blood as often as I can. It is amazing how much Carson perked up during his blood transfusion. I can't imagine what would have happened if blood would not have been readily available for him. The nurse told us that they give blood to kids on the oncology floor daily at this hospital. I really had no idea it was that common.

Today was our last day of chemo treatment for another 3 weeks! The only side effects he has shown is lack of appetite and a rash. The doctors are not real concerned about the rash, but are giving him benedryl to help relieve it a bit. We have had a respiratory therapist come in the past two evenings and they say he is breathing great....his oxygen levels are the best they can be.

They haven't decided exactly when we will be going home, but it will probably be Thursday or Friday. If he doesn't get sick at home, we won't have to come back until our next chemo treatment in 19 days. We can't wait to sleep in our own beds again! Hopefully our journal entries will stay nice and short in the near future. That would mean nothing is going on! We are ready for some days of rest and ready to watch Carson's belly get smaller!

Tuesday, August 31, 2004 8:25 PM CDT

Carson has done very well so far on chemotherapy. He actually was in a really good mood today and "talked" more than he has in a long time. It is so good to hear his sweet voice again. He also started audibly crying a little more today. The only major side effect he has had so far is having no appetite, which I hear is common. He has also developed a rash on his neck and lower portion of his face both nights after the chemo was given, but it has disappeared fairly quickly.

He had another 2 hour dose of chemotherapy between 5pm-7pm tonight. During that time, he napped and then played with daddy. He has really bonded with daddy these passed couple of weeks in the hospital. They have spent more time together than ever before. Now, it almost feels like he prefers daddy over mommy.....which is somewhat of a relief for me!

The "Child Life Specialist" visited us today to give Carson "Baby Einstein" videos, preschool CDs and toys. Living in a small hospital room for 2 weeks with a 5-month old baby, we need to change our source of entertainment frequently.

His wounds from the biopsy's are healing quickly and are not causing him as much pain. Diaper changing is really getting to be a challenge because his belly is so big. He doesn't like to have his legs lifted because his liver is clear down into the pelvis now. We have to roll him on his side to clean him up now, and he doesn't seem to mind that to much. We also noticed a sore on the back of his head tonight from laying on his bouncy seat for the last 4 days. He still isn't completely comfortable unless he is in his bouncy seat. Hopefully the chemo will shrink the liver quickly so we can get him into some different positions again!

Monday, August 30, 2004 7:07 PM CDT

The weekdays are always more exciting at Children's Mercy Hospital. Our oncologist came with more good news today. She is going to stage Carson's neuroblastoma in the low-risk category. (Remember, there is low, intermediate and high risk categories.) He will also be placed in stage 4S ("special neuroblastoma"), which is different than stage 4. Many infants under 12 months are placed in 4S because the cancer supposedly acts completely different in infants than in children. I believe we have a 10-year survival rate of 95% now according to the statistics. If you want more information on staging, you will find it at www.cancer.org under neuroblastoma.

Carson has become a mute today. He wrinkles his face like he wants to cry, but does not let out a sound. We don't know if he has become hoarse from screaming at the nurses over the past couple of weeks or if his liver is pressing on his lungs making him too tired to scream.

Carson's abdominal area has increased in size dramatically since we first arrived here two weeks ago. (Wow, we have been here two weeks.....and I still haven't been home yet!) His "innie" belly button is quickly becoming an "outie". And it has become almost impossible to lift his legs up for diaper changes b/c his big belly and biopsy incisions are in the way. Even though his cancer is not considered aggressive, his liver is growing very fast. However, the docs are not concerned about the size as long as it is not interfering with breathing, pooping, etc. The nurses/doctors reassure us that his liver will shrink quickly with chemotherapy.

As I type this, Carson is receiving his first hour of chemotherapy through his IV. It will last a total of 3 hours tonight and is given right here in our room. For this round, he will get 2-3 hours of chemotherapy each day for a total of 3 days. He will receive 4 rounds of chemotherapy treatments over the next 12 weeks. He will also get anti-nausea medication. We have been instructed to use gloves during diaper changes for 48 hours after the chemotherapy treatment. This is to prevent us from getting the chemicals on our skin. We will be allowed to go home between treatments, but Carson has been instructed not to attend any "chicken pox parties". Hopefully, after the 12 weeks, no more treatment will be needed and he will be cancer-free before Christmas.

Have a good night!
Kristi

Sunday, August 29, 2004 6:41 PM CDT

Carson had a much better day today and even decided to start smiling for us again this afternoon. Overall, it was another uneventful day after another sleepless night.

Check out our new photo in our photo album. It was taken last week when he had a NG tube in his nose so they could feed him barium before his CT scan.

Saturday, August 28, 2004 9:33 PM CDT

Carson slept, ate and was fussy all day long. He has incisions all over his body and it is very difficult to hold/comfort him. He ended up going a total of 26 1/2 hours without eating. We were ordered not to feed him until the surgeons came in this morning, but they didn't come until 8:30am. Carson was so excited to eat at 8:30 that he ate nonstop for 30 minutes! Other than that, it was a pretty uneventful day.

Friday, August 27, 2004 9:42 PM CDT

Surgery ended up starting at 1:00. It took about 2 hours with another 1 1/2 hours recovery. Carson came back upstairs hungry and woozy. He was VERY fussy and we had been told by the surgeon that he couldn't eat until he passed gas or pooped. (Kristi passed gas soon after getting back to the room and she was able to eat right away!) Our nurse thought he was fussy because he was hungry so she paged the doctor to see if we could move up the timetable a bit. Unfortunately, she got ahold of a doctor that said Carson couldn't eat until tomorrow morning! Of course, Carson is none to pleased but there's nothing we can do, so it will be over 24 hours by the time he gets to eat again.

The surgery went well. He really looks awful though. His face is very swollen and red. He has an incision in his neck and another about the level of his nipple where they put in the chemo port. About the level of his belly button there is a 2 inch long incision where they took the liver biopsy from, and then there's the incision below that from the biopsy last week. He also has two small holes in his back from the bone marrow aspiration. He is hard to pick up to comfort because we are putting pressure on the incisions no matter how we hold him. Hopefully they will heal fast and we can hold him with ease again. Our oncologist came up to the room several hours after the surgery and already had some results for us. There was a minimal amount of tumor cells in the bone marrow, and the DNA of the liver tissue had hyperdiploid cells in it. (this means the cells are in an early stage and should respond well to the chemo) She sounded very encouraged that Carson is going to respond well to treatment. We then spent the next hour going over what to expect with the chemo treatments. Right now, if things go as planned, he will have 4 rounds of chemo over 12 weeks, and he should start on Monday. If things are going well for him, we will be able to go home between treatments. They started him on Albumin tonight to get his protein levels higher in preparation for the chemo. They said this should also make some of his "puffiness" go down and he should look like himself again.

After we get through tonight, we are looking forward to a slow weekend. He should be able to eat all day both Saturday and Sunday. He just has to get through tonight without eating, and he should get a couple days of rest before chemo begins.

Thursday, August 26, 2004 9:32 PM CDT

First, I want to say "thank you" to everyone for all of your prayers. We LOVE looking at the guestbook everyday. It is amazing how fast this website traveled to people. We are so grateful to have a computer in Carson's room, so we can keep in contact with everyone through email and this website.

As for our day today.....
The oncologist decided to hook Carson's IV up to pain medication. Everytime we feel Carson is in pain, we just press a button. Don't worry.....they have it set so that we can't give him too much. We are hoping this will help him sleep better at night. Matt and I are so extremely sleep-deprived lately. The poor little guy has his days/nights mixed up for eating and sleeping now, although he really doesn't sleep much during the day either. After falling asleep, Carson has frequently been waking up 10 minutes after he lays down. We think it is because of all of the pain/pressure in his tummy and he can't get comfortable. Hopefully, this new pain medication will work for him. He has also started "grunting" with almost every breath. It does seem to be positional as we can get him to breathe normal by reclining him a bit. This is very concerning, the doctors think the liver is probably starting to push on the diaphram making breathing much harder. Because of this, and the discomfort he is really starting to show, they are talking about starting chemo earlier than we earlier discussed. We will have to wait and see how he does through tomorrow's surgery, and if he does well, he may start chemo as early as Monday.

Tonight, they are giving Carson a blood transfusion, so that he will for sure have enough blood supply for tomorrow's surgery. Tomorrow, he will be in surgery between 2 and 4 hours for a liver biopsy, a bone marrow aspiration and they will implant a PORT (surgically implanted direct IV line for chemo treatments).

The oncologist also brought us good news today. We got results back from our first biopsy sent to California and they came back in favor of a slow growing cancer. The histology of the tissue was either to be "favorable" or "unfavorable" and Carson's came back "favorable." This means we are 2 for 2 so far in having a treatable kind of neuroblastoma. After the biopsy tomorrow they will break down the DNA and we will find out the third and final dimension of how aggressive the tumor is. All of the doctors and nurses have been very positive in their attitudes towards Carson having a postive outcome.

Prayer Requests:
1. Carson does well in surgery and there is no excessive bleeding in his liver.
2. Carson is able to find comfort with the new pain meds, and help us all out during these long nights.
3. The DNA results be in favor of a slow growing cancer.

Wednesday, August 25, 2004 9:35 PM CDT

Another day of visits from the dermatologists, social worker, lactation consultant, oncologists, etc. Carson finished his second day of MIBG scans.

The oncologist came in to tell us the results of the CT scan. She even showed us the pictures and plans on copying them onto a disk to put in Carson's baby book. (I think she is doing this since Matt does MRIs). His liver is so huge on these scans. It is pressing on his stomach, which explains why he doesn't eat much anymore. There aren't any tumors in the spinal cord thus far, which is good news. However, he appears to have a small tumor by the cauda equina, which is below the end of the spinal cord. Because of this tumor, he will probably be placed in Stage IV and in the intermediate risk category. Since it is below the spinal cord, the tumor can still grow without causing paralysis, but it could cause other problems with sensation and pain. When I asked what his survival rates will be in this category, the oncologist said around 90 They make it sound like this type of cancer is very treatable......although it will still be somewhat of a long road for us. She said the two biggest, positive factors are his young age (less than 12 months old) and the fact that he does not have MYCN amplification. Those two factors really help his survival rate. We will for sure need to do chemotherapy now. That will begin in the next couple of weeks.

Matt went back to Lawrence today after receiving a phone call from my cousin. She said our garage door was open when she went by the house this morning. Well, it looks like lightning struck our house in Lawrence during the storms last night. Our garage door no longer works and our TV, cable modem, and answering machine all died. How unlucky is that!

Tuesday, August 24, 2004 7:48 PM CDT

GOOD NEWS! The oncologist just came in and told us there is no MYCN amplification in Carson's cancer. This takes him out of the high risk (agressive) cancer. So, now the chances of survival are much much higher. Intermediate risk: 80 percent survival rate. Low risk: 90-95 survival rate. There are still more tests and lab work needed to find out more of the factors, which will place us in either the intermediate or low risk catergory. According to the doctor, if we are in the low risk category, Carson may not need to do chemotherapy. Of all forms of human cancer, neuroblastoma is the one most likely to be cured without treatment.....if you are low-risk.

Carson had a CT scan and MIBG (Beta-IodoBenzylGuanidine)today. This test will light up inside the tumor cells so that a nuclear scan can detect them. The MIBG is done 3 days in a row and he needs to be sedated each time. Right now, the poor guy seems to be getting more drugs than food. Out of the past 7 days, he has not been allowed to eat for 10-14 hours each day b/c of all of the exams. They are giving him IV fluids to keep him hydrated.

I forgot to mention yesterday that he was taken off of steriods since they ruled out hemangiomas of the liver. It's a good thing, b/c the steriods were giving him a TERRIBLE diaper rash.

Monday, August 23, 2004 9:30 PM CDT

It was definitely a typical weekday around here. Lots of doctors and other staff visiting. Much slower than the weekend.

The oncologist came in about mid-morning with our neuroblastoma diagnosis. Even though we knew it was still a possibility, it still blew us away. After speaking with two oncologists today, we are feeling much better about the diagnosis. Evidently, if a child is going to get neuroblastoma, they have a better chance of beating it if they are under 12 months old. I've posted the statistics below.

The plan now is to get another CT scan, but this time they will scan the chest, abdomen and pelvis area. They are wanting to make sure the primary tumor has not invaded the spinal canal. If it has, there is the possiblity of paralysis. Carson will also get a bone scan (in nuclear medicine) tomorrow. Then sometime this week, he will have a liver biopsy to determine how aggressive the cancer is. After the results of the scans and the second biopsy comes back, the oncologists will determine our course of treatment. If he has a less aggressive cancer, he has a survival rate of 90-95 Since this is an infant cancer, they tell us it most likely won't come back once it is gone.


Survival by age: The 5-year survival for children with neuroblastoma younger than age 1 is 83For children between 1 and 4 years old it is 55For those 5 years and older, it is 40

Survival by risk group: Low-risk children have a long-term (over 10 years) survival of around 95Intermediate-risk children’s long-term survival is around 80he long-term survival of high-risk children is around 25

http://www.cancer.org/docroot/CRI/content/CRI_2_4_3X_How_is_neuroblastoma_staged_31.asp?rnav=cri

Monday, August 23, 2004 3:13 PM CDT

The biopsy and urine sample both came back this morning. The oncologist told us Carson has neuroblastoma, which is cancerous. There are only 550 cases in the United States each year. I'll write more later.

Saturday, August 21st

We had less doctors visit us today since it is the weekend. The docs told us to start NPO at 2:00am b/c surgery was scheduled between 6-8am. Well, after 8am our nurse called down to surgery asking where they were. Surgery said there was a "miscommunication" and they don't have us on the schedule until noon. Well, since it was already within the 4 hour NPO timeframe, I was still ordered not to feed Carson. As I had guessed, they didn't pick Carson up for surgery until 2:00pm. He went a total of 14 hours today without eating.

Carson did well "surgically". The lump wasn't as big as they thought and it was only a 30 minute procedure. We will know the results of the biopsy on Monday or Tuesday.

Friday, August 20th

Yes! A somewhat relaxing day! And Carson was able to eat whenever he pleased. He was much happier today.

We went to the cardiology dept today and had an EKG and an echo administered to examine Carson's heart. Both turned out excellent. (Usually with hemangiomas, the heart is affected b/c it has to work harder due to all of the extra blood vessels in the liver.)

The team of doctors that have been in and out of our room since Wednesday have determined (for now) that Carson's liver is filled with hemangiomas....although they are still doing more tests to completely rule out cancer. So, they started treating the hemangiomas today with steriods. He takes the steriods through IV every 6 hours. He also takes Zantac through IV to offset the side effects of the steriods (upset stomach).

The pediatric dermatologists that have been visiting our room have recommended doing a biopsy on a lump that appeared last Saturday on Carson's side. It is right under the skin. The biopsy is schedule for tomorrow. They are hoping this lump will give them a better idea of what is going on in the liver. They are pretty sure this lump is associated with the disease in the liver.....and the dermatologist DO NOT think this lump is a hemangioma....which leads to more confusion.

Thursday, August 19th

Another day of NPO (nothing past the oral cavity). Carson's last feeding was at 8:00 b/c they planned on doing an MRI of the abdominal area at noon. Well, noon came and went. We finally went down to MRI at 2:15. Carson is getting use to not eating during the day now (not really!). Since MRI is a 45 minute exam, they had to sedate hime much heavier than they did for the CT yesterday. After the exam, the poor guy didn't eat until 9:30pm b/c he was still so drugged he couldn't eat without choking. So, he went 13 1/2 hours without eating today. We were not happy campers. And as you can imagine, he made up for it with night-time feedings!

Anyway, back to the MRI. It showed that the scan was more consistent with hemangiomas than neuroblastoma. Also, all blood work is still coming back normal confusing doctors more. This is b/c the liver is functioning great, although it is full of disease.

Wednesday, August 18th

This morning, Carson's last feeding was at 8:00am. At 10:00, the radiology nurses stuck a tube down Carson's nose and fed him the koolaid barium for the CT scan. Poor guy. At 12:30, they sedated Carson for the CT scan because he is not allowed to move at all for the 5-minute exam.

After the CT scan, the pediatric liver doctor and the radiologist reviewed all of the slides for 45 minutes. Meanwhile, Carson is screaming in the nurse's arms and they still wouldn't let me feed him....in case, they needed to do more scanning. After 45 minutes, they let me feed Carson and the liver doctor came in to say they were admitting Carson into the hospital. The CT scan was confusing. It showed lots of hemangiomas in the liver (consistent with the ultrasound), but there was an area by the adrenal gland that was questionable. The liver was so enlarged, it was covering the adrenal gland. This made them question a diagnosis of neuroblastoma, which is cancerous and involves the adrenal gland. The liver doctor admitted us onto the oncology floor under the care of an oncologist.

So, we were admitted to the hospital without anything on us. No calling cards, no email, and we couldn't use the cell phone in the hospital. We had doctors visiting us left and right. Carson preceded to pee all over my only pair of pants and spit up several times on my only shirt.

Tuesday, August 17th

Well, today was just plain awful. We had an ultrasound at Children's Mercy at 10:15 this morning. They instructed us not to feed Carson after 6:15am. He is used to eating every 2-3 hours, so it was very hard waiting for that exam. After the ultrasound, they told me I could feed him, but then NOT feed him again for another 4 hours b/c they were going to try and squeeze him in for a CT scan that afternoon. We saw the pediatric liver dr at 1:30 and he didn't have much to say. Basically, Carson has lots of hemangiomas on his liver and they need to do more tests to find out more. He wants to start treatment by the end of this week. He says it could be life-threatening, but then he said "well, it could be a short road or a long road, but we'll get it taken care of".

After the appt, we had to get more bloodwork taken on Carson (that was awful!) and then put an IV in for the CT scan. For a CT scan, you need to drink barium contrast before the exam. Well, of course, Carson wasn't going to have any of that. The nurses finally had to syringe feed it to him as he screamed at the top of his lungs the whole time. Well, it was too late in the afternoon to sedate him, so they wanted me to try to put him asleep for the scan....b/c he can't move during the scan. How in the world are you suppose to put a hungry screaming baby to sleep at 3:30 in the afternoon when his only feeding for the day was at 11:30! Well, it didn't work. So, we are going back tomorrow morning and they will sedate him before the exam. Again, we have to starve him before the exam.

They had such a hard time finding Carson's veins for the IV that they wanted us to leave it in over night, so they don't have to do it again tomorrow. So, Carson hand/arm is all wrapped up so he won't pull it out.

Monday, August 16

Carson's peditrician called this a.m. and wanted Carson to come in again today for an "unofficial" visit to check his vital signs. Again, everything was normal.

Friday, August 13--Sunday, August 15

Just anxiously awaiting our appt.

Thursday, August 12

Carson's peditrician saw him today to check his vital signs, since it will be awhile before we see the liver doctor. His vital signs are all good. He is very healthy and isn't showing any symptoms. He weighed in at 18 pounds 10 oz. He is 4 1/2 months old.

Wednesday, August 11

The Liver Care Center called us this morning to schedule an appt for Carson in the "next couple of weeks". After talking with our doctor, they made us an appt for next Tuesday, August 17th. So, we have to wait a full week.

Tuesday, August 10th

Carson had an "unofficial" ultrasound at Lawrence Memorial Hospital. We thought his belly felt abnormal, so we had it scanned. The radiologist informed us that Carson's liver was very enlarged and wanted Carson's doctor to refer us to Children's Mercy Hospital.

Carson's doctor called the pediatric liver specialist at Children's Mercy. Since it was late in the afternoon already, the Liver Care Center was to call us with an appt the following morning.

Sunday, August 22, 2004 2:29 PM CDT

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