Loki's Journey

Good Evening:

As some have noted, there has been nothing posted for a week or so. All has, indeed, been going well. We had visitors this past week, Pete's parents and sister, which was fun. Loki really enjoyed seeing them, and misses them too. Keeps saying, "Na Na Na", and looking around.

Chemo: On Aug 22nd, Loki went in for his "big" chemo appointment. Everything went very well, and they released us the next day by noon. He had no reactions. We were expectly to stay for three days. In addition, Loki's doc prescribed a mutivitamin with Flouride, since he's not really drinking a whole lot of tap water.

Tues: Loki's foley catheter broke...yup, right in two. We (Pat, Larry, Jamie, and I) got to make a quick trip into his urologist's office. Well, the doc decided to let Loki go without the foley, and see how he does. He has been doing wonderfully. He had some initial discomfort, but has been urinating on his own his Tues afternoon with little discomfort. Wonderful, wonderful news!

Friday Aug 29th: Lokis blood counts were very good and he recieved his vincristine. Loki does have another yeast infection, but part of that is the IV antibiotics, and the oral antibiotics that he just finished. We are treating it with Nystatin, but I need to call on Tues, and see we can get something a little stronger.

Surgery: Still planned for the 1st or 2nd week in October, but until they do the CT scans we won't know more. The docs know the tumor has shrunk, but won't know how much until the scans.

Until then, Loki's chemo schedule is:

Sept 5th: Vincristine (outpatient)
Sept 12th: Vincristine, Topotecan, Cyclophosphamide (inpatient 5 days, but may be able to do outpatient)
Sept 19th: Vincristine
Sept 26th: Vincristine (Completion of first Chemo course)

Early Oct: Surgery

Eating: Loki has begun eating some table food again. Granted, it depends on the day, exactly what he will eat.

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Loki is a very fast little one.....when that foley came out, his activity level went UP!!!

He is refusing to be carried, he wants to walk on his own, and he definitely lets you know it. He's asserting his 1 year old independence on a lot of things. If dinner includes a spoon, he wants to feed himself, and you...if you get too close.

We are trying to transition him to a cup now that things have settled down with his medical care, and we are in a routine.

He is still sleeping alot, which is good, in a way. But, when he wakes up, he's just a fountain of energy.

Good Morning:

Loki has been doing well. On his Wed. visit to the clinic, his blood counts were good, but he needed a blood transfusion to prepare for the upcoming chemo treatment today. They did take another urine sample, and sent a small sample of tissue to pathology, as Loki was passing alot of tissue. They wanted to take a look at it to see if the tissue was dead tumor (necrotic tumor). His foley kept getting clogged due to the tissue, so I asked if it was okay to flush it several times a day, and was told that it was safe. So, Loki is feeling much more comfortable.

He begins his 3rd round of Chemo (Vincristine, Dactinomyocin, and Cyclophosphamide) today. He will be in the hospital for approx. 3 days. This is the half way point (Week wise) during this initial chemo treatment. Including this week, he only has 6 more weeks before his surgery.

He has been eating well, and is very active. He has had problems with the foley catheter, and he frequently urinates around the catheter which could mean a few things: (1) blockage, or (2) he's using his own muscles. So, depending on what the docs decide, that foley may come out soon, but they want to make sure he's ready. Otherwise, they may have to put it back.

It sounds like the docs are going to start planning Loki's surgery soon, so I am going to ask his Oncology doctor about it today. I spoke to one of his oncology doctors about Loki's bladder, and the prospects for saving it. Now, this is strictly "off-record" as no firm decisions have been made yet. But, from the inital sets of CTs, the tumor is affecting the neck of Loki's bladder, which is not a very good sign. His prostate will mostly likely be removed entirely. His urology team will make the final call on though, and I have not heard anything from them yet. However, I did find out from his urology doctor that if he does lose his bladder, there are several surgical remedies available to Loki. But, there is no such thing as an artificial bladder, most likely they will take a section of his intestine to rebuild the organ.

Pat and Larry arrived this morning with Jamie. They are staying for the next week or so.

Loki was released from the hospital yesterday. The docs are pretty sure he had an infection in the foley catheter that was replaced last Thurs., but I don't know if that infection is still present in the current catheter. He had IV antibiotics for several days.

I know that the blood cultures are currently still negative, but I don't know what the recent urine cultures show. Loki is on Keflex for the next 10 days, and needs to go in tomorrow (Wed) to get his blood counts and urine checked again. Hopefully, we caught the infection very early, and it gets cleared up quickly.

His oncology doctors also feel that the fever could also be in part to an inflammatory response of the body as the tumor is dying, or "melting away" as they say.

We also go in again on Friday for Loki's next inpaitent chemo treatment: Vincristine, Dactinomyosin, and Cyclophosphamide. He will be in for approximately 3 days. Loki is becoming more comfortable with the hospital and nursing staff, which is good and bad. Good in that it's not so stressful for him, but bad, in that, no child should have to become "comfortable" and accustomed to a hospital setting.

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Aside from the medical issues, Loki is doing very well. He has his moments when he's frustrated and scared, but all of the frustration is not medically related. It's more a 1yr old thing. He has names for somethings, but mostly points, grunts, and stomps his foot. He gets frustrated when you don't figure out what he wants. I just point to different things, asking, "Do you want 'object'?", until he nods or points and grunts again.

Also, he's walking is getting alot better, even with the foley bag in tow. He dances to the Wiggles and Blues Clues, and tries to sing along with Dora the Explorer. Mostly its just sounds in tune to the song, but its getting clearer. His favorite book right now is a Blues Clues read along, sound book!!!! He sits and sings and bounces...just loves it.

Morning:

Well, Loki had more fever last night, and this morning. Not nearly as high as before, but a fever none-the-less. So, we are going to be staying until the fever resolves itself, and the blood and urine cultures come back totally negative. They drew them again this morning, due to the recurrent fever.

Loki is currently 1 hour into his nap, and will probably sleep for at least another 45 minutes. Okay, off to find liquid caffine (aka coffee).

Alicia

HI All!

After I posted on Friday, Loki woke up with a temp that kept rising, at about 8:30pm we called in to the doc. as his temp was 102.1 F by ear, and 101 F underarm (add one degree so 102 F), which is way over the 100.4 F mark. Basically, he was fighting off an infection, thankfully his counts are really good, so he has enough white blood cells to fight this thing off. He's been getting IV antibiotics every few hours, and they are helping his body fight off the infection (Urinary Tract Infection). The doctors are doing another urine culture (taken Friday), and a blood culture (taken Friday). As long as the blood culture comes back negative, we should be out of here by Monday. If not, then we might be in here a little longer. He's managed to keep the fever down until tonight, when it spiked a little, and the doctor okayed some Tylenol.

There is still particulate in his urine, but alot of tumor pieces too!!! Loki's doctor expressed that he felt this tumor was responding very well to treatment, and that it could shrink significantly in the next few weeks.

Thank-you every for all your thoughts and prayers. And, I will keep you updated.

Alicia

Afternoon:

Well, power has stayed on, though they may start rolling brown outs, but we have not had one yet. Knock on Wood.

A couple things:

Loki's counts are good, but the hemoglobin is still trending down, so he may need a blood transfusion early next week, or before his chemo on Friday, Aug. 22nd. He will be in the hospital for about 3 days (including Friday).

In addition, that suspected UTI was indeed an infection of E. Coli...yuck. So, I definitely will be giving him antibiotics for a while, at least through next week. I am very very glad they changed out that catheter now. The doc took another urine sample for culture, but it takes 3 days so we will know next week. His white blood cell count is a little elevated indicating that he is probably fighting off the infection still.

We now know when Loki's next CT will be. It will be 11:30 am on Sept. 26th. Why so far away? It is going to be the CT they use to determine how the surgery will go, for planning. Surgery is planned for either the first week or second week in Oct. We do not yet have a set date, but Loki is responding very very well to chemotherapy according to the doctor, and he anticipates tumor shrinkage all through this 12 wk course, so the surgery will not be early. They want to shrink this as much as possible. However, the doctors have not told us when they will meet with us to discuss everything.

In addition, we meet with the radiation therapist Sept 24th, to discuss the radiation treatment for Loki after he recovers from surgery.

Alicia

Good Morning:

Well, we got our power restored around 7:55am, and water came back shortly after that. We are under a boil alert until noon tomorrow, but the neighbors (Nichole's Family) were kind enough to share some of their jug water with us. THANK-YOU! Other than that, it was hot and muggy, but we are all safe. Power went out about 4:15 pm yesterday. It took Peter an hour to get home, should have been 15 minutes. It was not as chaotic as say New York, but stressful none-the-less.

Loki's temp did go higher Wed. night, and I called, but since his counts were okay, and they knew about the suspected UTI, the doctor told me to give Tylenol (Yes, I need to call before even giving Tylenol). The doctor said that they would definitely be switching out that foley on Thurs. So, that is what they did.

Thurs. around noon, Loki was sedated in the OR, and they replaced his catheter. We were out of their and home before the power outage, thankfully. The Cleveland Clinic has several generaters though, and I feel Loki would have been fine either way. We did get some wonderful news. The hydronephrosis is basically gone, which tells the doctors that tumor is definitely SHRINKING!!!!! How much it has shrunk we do not know? We also don't know when the next CT is scheduled, probably more towards the end of this month. I do know that they definitely want the foley switched every 4 weeks, but it sounds like they may see if he even needs it, rather than switch it out again!!!! Now that would be a WONDERFUL improvement.

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I just called and Loki is still scheduled to go into the clinic today to get his counts checked and to get his vincristine! So, I am going to log off. I just boiled some water so the family could wash up before we go out. And, since daddy just let Loki have the washable markers....and Loki is putting on "war paint", we will definitely need to be washing up.

Afternoon!

Well, Loki's got a little temperature. Sent him down for a nap, hopefully, it won't go any higher. 100.2 by ear, 100 under arm.

He has a brief surgical procedure tomorrow at around noon, under heavy sedation, to remove then replace his foley catheter since he needs it. Foley catheters are only intended to be placed short term, but can be used long term if needed. However, they should be replaced/exchanged for a new one regularly. So this is just routine, and hopefully, that will help clear up the cloudy urine.

However, if Loki's temp gets any higher I am going to have to call in. Sounds silly, but any temp over 100.4 is considered a fever, and is sign of infection in chemo patients. If temp over 100.4, the docs want you to call. So, we will see what happens. His counts yesterday were 1.73 which is above the 1.5 level, but still borderline for infection. Plus, with the possible UTI, it's a real possibility we will be making a trip into the ER tonight. And, that the foley exchange will be put off.

Alicia

Good Morning:

I know, I know...no updates since Sat...

Yesterday, I took Loki into the Dr. to get his counts checked, and to get him checked for a UTI or infection in his foley catheter. His urine has been hazy, cloudy, with dust like granules, almost like fine sand....and can you say stinky. Also, he had an ultrasound to get his kidneys checked again.

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First, according to the ultrasound Dr Loki's kidneys look very good, the condition has dramatically improved, which means that the fluid accumulation has relieved itself alittle! I am waiting on offical word from Loki's urologist. As the fluid accumulation has decreased, that indicates that the pressure on the ureter's has decreased, which means the tumor has SHRUNK in that region!!!!!!! Any news like that makes you want to jump up and down for joy.

Second, the UTI. Loki's urine did test positive for the presence of white blood cells, so they are culturing the urine to see if it is indeed an infection. However, the foley catheter has been in place since July 17th and needs to be switched out. So, I waiting on word from the urologist about that too. I think he wants to switch it tomorrow, so I hope he gets back to me soon. I know he wanted to review the ultrasound information first. Either way, Loki is on an oral antibiotic to help prepare his for his foley being switched out since they think he might have a UTI.

Third, he is no longer neutropenic, I mean he's still borderline, but not at as high a risk of infection. But, his counts are good. His hemoglobin and platelets are a little on the lower side, but not so low they would require a transfusion.

On Friday, Loki has another dose of Vincristine, and his counts checked again. The following week Pat and Larry will be in town, and Loki is scheduled for an overnight to get Vincristine, Dactinomyosin, and Cyclophosphamide (VAC). I am hoping Loki stays out of the hospital, and we can all go to the zoo, or something like that. :-)

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In addition, Loki still has not required any lactulose to move his bowels, and he is eating more and more gerber baby food. It's great....he walks over to this spoon and jar we let him play with, and he brings it to me....to let me know he's hungry.

Alicia

So its Sat!

Loki's Dr apt yesterday went very well. He is considered neutropenic (low white blood cells - moderate infection risk), but not so immunosuppressed that we need to keep him away from others (severe). That would be Sunday/Monday. We thought his red blood cell count was low since he is pale, and was sleeping alot but it is not so low, as to require a blood transfusion.

Yesterday, we finally got to see the original CT scans of the tumor, and it does indeed fill his pelvis There is not even enough room for the organs that should be there. The CT scans look as if the tumor is displacing all of the organs of the pelvis, up, forward and into the abdomen. Therefore, the bowel is/was displaced, the bladder they could not see because it was smushed flat as a pancake (but can now see it on the later CTs), all those organs are displaced, causing the constipation and pressure on his ureter (the hydronephrosis, fluid accumulation in the kidney). We did not see the follow up CTs since surgery still had them. However, we have been told that the bladder is now visible, and the tumor has receeded in some areas.

Today, we went to the pediatric oncology/hematology annual picnic, the dr. said he could. It was fun. Loki had a good time for a while, then got tired so we came home. He played catch, walked around, got a balloon animal, and discovered he is terrified of the green stringy stuff on the ground, aka grass.

On the way home, he seemed to go through several bladder spasms, which he hasn't had for a while, and I will have to mention to the Dr. next Friday. I flushed the foley catheter just in case it was clogged, but it didn't appear to be. So, we gave some meds to prevent the spasms.

On Tues. Loki goes in to have his counts checked, and to have a ultrasound of his kidneys. The urologist did tell the oncologist that the condition will NOT be allowed to persist beyond another 2.5 wks. So, if the fluid accumulation doesn't go away, then Loki may have to shunts put in, to drain the fluid. We are hoping the condition is begining to correct itself.

On a positive note: Loki's herniated belly button, is no longer herniated....it's back to an innie!!!! when resting. That's is a wonderful sign to me, since it became herniated after the tumor grew larger. Hopefully, this is a sign that the tumor is shrinking!

Morning:

Things are going well today. Loki has been hungry!! So that is wonderful to see....although he seems to want chocolate and salty things, but hey, as long as he is drinking fluids, I am willing to over look the chocolate. I just laid him down for a nap, since he was rubbing his eyes, and laying his head on the couch.

Active would be the word to describe him today. He took a dive into the wooden rocking chair, with a resounding...THUMP. He has this huge goose egg above his eye...ouch. I called the consulting urologists office to see if I could find out more information on the plan of action for the hydronephrosis (swollen kidneys), just so Peter and I know what's going on.

I am going to take a few more pictures, and put them on the website a little later this afternoon, or early evening (after we go grocery shopping).

Alicia

Well, we are at home, and Loki is resting. I am going to join him shortly. He had a mixed morning, but was glad to see the hospital go "bye-bye". He really isn't eating or drinking yet, but since he actually showed interest in his food this morning, rather than tossing it. They let us go home, with the instructions to call tomorrow if he hasn't really taken in enough liquid. We would not be hospitalized, but they might hydrate him at the clinic. The chemo really makes him feel awful, and he doesn't usually eat anything, beyond a few cheerioes.

Loki's kidneys are still swollen, but since the Urologist didnt' come see us, only sent word through our oncologist....I don't know. They are going to watch them, and set a limit, say another 2 weeks to see if the swelling goes down. Because Loki is not showing any decreased kidney function, they are still taking the wait and see approach. This makes me nervous, and I think I might email his Urologist...need to find that email, just to find out a little more information. And, maybe some specifics about his kidneys since his discharge papers said, "Worsening".

Loki has his vincristine Friday, and I going to ask the oncologist if he felt this 5 day course went well. If it did, I would like to reduce his inpatient stay, and try to get him to give Loki the majority of the 5 day course outpatient, so maybe an overnight stay at the hospital, and the rest at clinic.

In addition, they did not draw his blood counts this morning, so I requested that they do. Since, I keep track of the trends so I know when to keep him in doors, and away from those with colds. So, hopefully, they will call to give me that information. His red blood cell count was low a few days ago, and since his cell counts have not started to drop from this chemo, I am a little worried that he may require another red blood cell transfusion, but we will have to wait and see.

I am to start Neupogen shots tonight, which stimulate the body's production of red and white blood cells. They help keep Loki's cell levels up, but they levels do eventually drop, as it takes a while for the Neupogen to take effect.

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Platelets and Blood, okay, when we first found out about this cancer, Peter and I asked that very question. Now, everyone who would be donating would be healthy and it takes a TON of blood just to get a single dose of platelets, but the doctors really are worried that the blood would not go through the standard screening process and things might slip though that would do more harm than good. They didn't even want Peter and I to donate blood specifically for Loki. Part of the issue is storage, as blood only has so much of a shelf life, part of it is blood types, and part of it is the actual number of people necessary to get a single blood product. I can ask them about it again, but it will be Friday before I can do that.

Alicia

Good Evening:

Loki has been doing so-so today. He was in a fair mood for most of the day, but had nausea and a short bout of vomiting. He is getting his last chemo treatment for this inpatient series right now. Then, we go home tomorrow, if hope!

He was very clingy this morning, and did not want to walk...he kept stumbling and falling to his knees...which worried me since one of the side effects of vincristine is peripheral nerve impairment (temporary). But, as the day progressed, he began to walk around and have a good time, so that does not appear to be the case. He wanted to be held, so I am guessing he just wasn't feeling well.

He did get an ultrasound today, but we do not yet know the results. We were told, briefly, that it appeared to our oncologist that the swelling in Loki's kidneys is still present. But, he was going to defer treatment and analysis to Loki's urologist. So, I will hopefully know more later tonight or tomorrow. I don't think they will send us home, if his kidneys are still swollen, or as the doctor put it, the tumor is still putting pressure on the ureter, as far as he can tell. But, again, we must wait for the urologists opinion. They could do a number of things: (1) wait and see, or (2) put in stents to drain the kidneys. If they put in stents, that would be done down in X-Ray, under general sedation. (If I remember the discussion correctly.)

I don't know what his blood cell count was today. I haven't received a print out. But, I suspect his hemoglobin is dropping as he was very very tired today, but had a full nights sleep. Hopefully, he won't need another transfusion, but I suspect that he might on Friday. In addition, his platelets, which were strong for the last several weeks, have also begun to drop, which might require a platelet transfusion at some point.

Otherwise, we will be back to the clinic on Friday for his outpatient vincristine.

Also, on Loki's website www.geocities.com/loki_jensen/Loki_Rhabdo , the guestbook was full, who knew guestbooks get full. So, I archived the posts and linked them to the pages below the guestbook link.

Finally, for all who read this, another July Sparkler (my wonderful mommies group) has been touched by cancer. This time Amanda's husband Jeb. Please keep them in your thoughts and prayers, as this is very new to them, as he was diagnosed Aug. 1st.

Alicia

Well, Loki spent alot of time today fighting sleep, and fighting a low-grade fever....not quite a fever, but getting there. We asked for a dose of tylenol to stop that, and the nurse suggested a little benedryl to help him sleep. Oh that 4 hour nap did him wonders. No more low grade fever.

He is currently playing at the giant fish tank (Think All the Fish from Finding Nemo) in front of the M33 ward.....pointing to the fishes, and making an "fffffisss" sound. It is wonderful to watch.

He is walking, as well as he can with the foley catheter in place....all over the place....giggling, and playing hide-and-go seek/peekabo with daddy. Then, waving bye-bye, and ducking behind the fish tank.

I hope his night goes well. He begins another round of chemo in about 10 minutes, so I need to get back to his room. Currently, daddy and Loki are looking in a funhouse mirror. I really love that the Children's Hospital, is really built like a place for children.

We are guessing that we will be heading home sometime on Thurs. about 24 hours after his last chemo treatment for this round.

8/3/2003 & 8/2/2003

8/3/2003

Loki is doing well this morning, no pain in urination, and no apparent nausea yet. We are still waiting on his blood cell counts to come back. I am hoping the transfusion he recieved will boost his red blood cell count and he won't require another one. Also, he shouldn't be neutropenic (low white cells) yet, but that will be coming soon.

He appears to be very tired, even though he slept most of the night, and he's got no tummy for food, even his pediasure.

Peter is calling, Loki must have a dirty diaper.



8/2/2003

Loki seemed to tolerate his first round of vincristine, topotecan, and cyclophosphamide (8/1/2003 - night) fairly well. He was generally sore and seemed to have some mild pain, but tylenol helped. The rest of the night was not quite so nice (early 8/2).

Loki had a very rough night last night. I tried to get him to bed by 9pm, but he was having either bladder spasms or pain in urination. Eventually, he began urinating around his foley with nothing coming out of the foley, which is a sign of a blockage in the catheter. Urology came over at around 3 am, and flushed his catheter, and he was urinating just fine after that. So, now they need to flush his catheter at least once a shift to prevent the blockage for occuring again.

It looks like the part of the tumor that is in his bladder is beginning to fall apart, which is wonderful, but it can cause a blockage in the catheter.

He then got sick in the morning, just once, but yuck. They gave some anti-nausea meds, but he really hasn't wanted to eat much after that.

His 2nd treatment (8/2/003) went well.

Afternoon, Loki went into the Clinic today for his fourth chemo treatment, we will be here at least 5 days. I will let everyone know the number when we get placed in a room.

Loki's blood counts indicated that his hemoglobin was low and he required a blood transfusion. So, that's where we are. Up in the clinic, getting a transfusion...over two hours. He did get his dose of vincristine, and will get his remaining chemo meds later this evening, after we are officially admitted to the hospital.

Other than that, he has been sleeping for about 1 1/2 hours, missed the last part of Godzilla (the remake)...but he seemed to really like the big lizard while he was awake.

Other than that, all looks well. And, I will keep you all posted.