Loki's Journey

First and foremost, we are currently waiting for a 2nd opinion on whether the doctors can spare the bladder. We hope to hear by the end of the week, as surgery is scheduled for Monday.

We feel it is important for Loki, as this is his body we are making decisions about, and we want to make sure we make the most informed decisions.

Consultation on the radiation therapy has already taken place amongst several professionals taking part in the Intergroup Rhabdomyosarcoma Studies.
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Loki's surgery is scheduled for Monday, Oct. 6th...yes, that's next Monday. We are to bring him into the hospital on Sunday for admission. They are going to "clean" out his intestine and bowel using medication, because part of it will be used in the surgery. He will be getting a medicine to cause him void alot, and antibiotics to kill the bacteria in his intestine in order to sterilize it.

The tumor has "shrunk" but a "complete response", as it was described to me. It has gotten soft and not as dense, but it is still there. I don't have percentages.

The tumor is dying, and its blood supply is dying. It shows many areas of cell death. But, the tumor still needs to be removed, as there is no way to guarntee it is all dead. It is still invading the bladder. On film, there does not appear to be very much normal bladder tissue left in the lower region of the bladder. The prostate is expected to be all tumor.

Additional chemotherapy, at this time, would not "shrink" the tumor further as chemo works through the blood, and if the blood support to the tumor is dying, the effect of chemotherapy would be diminished, and further shrinkage may be minimal.

What will be done?

The prostate and bladder are to be removed, in addition to, a region of tissue around the cancer to create a negative margin. On film, the bowel and colon do not appeart to affected, only displaced, but the doctors can not rule on their involvement. The original CT scans indicated that the tumor may be encapsulated, which would be a good thing. The tumor appeared round, solid, not winding and bumpy. This means that the tumor is less likely to be "attached" to the bowel, colon, or abdominal wall, rather the tumor is most likely pushing these things out of the way.

The surgery is expected to be 6 hours+, with 5-7 days, at least, recovery in hospital, and several weeks to full recovery. The urine output will temporarily be diverted to a bag external to Loki's body. Internally, Loki's ureters (from his kidneys) will be routed to a piece of bowel, then to the outside of his body, to drain into a bag. So, yes, Loki will have an intestinal surgery as well.

The doctors can not rule out the need to "temporarily" remove part of Loki's bowel, requiring a colostomy; but it is not expected based on the scans.

Why so drastic a surgery?

The tumor affects the prostate and neck region of the bladder. This region will need to be removed. The neck of the bladder drains urine into the urethra which travels through the prostate on its way out of the body. All this region (neck of the bladder, prostate, part of urethra) and some of the muscles controlling urination need to be removed. As a result, there is no way to reconnect the remaining portion of the bladder so that it is functional. In addition, there is the question about how much bladder tissue is actually invovled.

In addition, Loki WILL need radiation; the doctors decided, with consultation to other Intergroup Rhabdomyosarcoma Researchers and Doctors, that radiation can NOT be avoided, as was originally hoped. The original dosage and field required for a tumor of this size would have significant side effects on pelvic bone and organ development and preservation.

By doing radical surgery, the doctors are hoping to reduce the necessary field of radiation and dosage of radiation. Loki will still face some bone growth issues, and organs may be scarred by the radiation. However, the plan to narrow the radiation field, and use lower dosages to reduce tissue scarring and damage to any pelvic growth plates.

In addition, the surgeons are researching the use of "spacers" to be implanted in Loki's abdomin to push the intestine and bowel, up and out of the radiation field, in an effort to protect them. I will know more about this prospect tomorrow after speaking with the surgeons.

Long Term Issues:

After radiation and chemotherapy, Loki will have a second surgery to create an internal resivour out of bowel or part of the stomach to hold urine. The urine can then be drained via a catheter when desired. The outlet can be hidden in the belly button.

In addition, the external radiation will probably still affect Loki's developing body. The plan is to try to reduce those effects, but they will still be present to some degree.

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If you have specific questions, you can email me: rowan_pikachu@yahoo.com and I can answer them.

Alicia

Good Afternoon:

Loki had three majors appointments this past week.

We went to see the radiation therapy doctors on Wed, and were a little concerned with the response we had recieved. Basically, they couldn't really decide anything until they saw Loki's CT scan, which was set for Friday. Yet, they felt that Loki would not be recieving any radiation due to the risks, and that a "radical" surgery was more likely.

We are not sure how we feel about this, as there are risks and consequences associated with both radical surgery and radiation. It is going to be a matter of balancing the risks to kill the cancer, making sure it doesn't come back, and preserving quality of life.

The full doctor team (Oncology, Radiation Therapy, and Urology) have yet to sit down at discuss things over his latest scans.

On Friday, Loki had his CT scans in the morning, and his final chemotherapy appointment (Number 12, Wk # 11) before his evaluation. According to the CT scan, the tumor has shrunk, but it still fairly "large" as tumors are concerned. It is about the size of a softball or grapefruit. The oncologists are also recommending radical surgery.

So, tomorrow:

1. We have a urology appointment to discuss surgical options (most likely).
2. Loki's doctors are all sitting down at around 5pm to go over Loki's case, and make some treatment recommendations.

We have requested a concurrent 2nd surgical opinion from the Mayo clinic, as we are certain that the recommendation will be radical surgery. Radiation is still a possibility, but due to Loki's age, there would be bone growth complications and tissue damage due to the dosage needed to treat him.

So, what does radical mean:

We don't know that yet. What we do know is that the tumor is still considered large. Loki has had a response to chemotherapy, but not a complete response. Therefore, a surgical intervention would most likely involve removal of the "affected tissue/organs" plus a margin around those tissues. So, loss of prostate, and bladder most likely will be suggested. The possible loss of bowel was mentioned, but only if the tumor has attached itself to the intestine or colon. But, we will explore all options available to us before making any decisions.

The CT scan did show that the tumor has large areas of suspected necrosis (dead tissue). But, there is no guarntee thatt all the tumor is dead. So, a biopsy may be useful, but we are not sure.

Finally, if we do delay Loki's treatment to seek a 2nd opinion (or even 3rd ), chemotherapy may be used to try and shrink the tumor further, or as a maintanence therapy, until we decide how to proceed.

Therefore, we have an idea of what will be suggested, but no clear picture yet. We will most likely find out on Tuesday.

Good Very Early Morning:

Peter is indeed alright, no bumps, or bruises, but I suspect he is going to be sore in the morning. We will decide then whether to have him see his doctor. Our car is in the shop. He called police from the scene, and had them take a statement. Then called the insurance agent, while I looked up insurance-approved shops close to home online. They towed him to one, and the adjustor will be out to look at the car tomorrow.

Our biggest dilemma was: (1) How to get him home? He was going to walk the 3 miles. Um, not my first choice. My friend Kara ended up driving out to get him for me (THANK YOU!!!), and (2) How to get to CCF tomorrow, with a neutropenic baby? Our friends Mike and Kelly are borrowing us Kelly's car tomorrow (THANK YOU!!) so that we have a little time to get our "Enterprise" rent-a-car, which was closed by the time all this happened. They open at 8am, our appointments start at 10:20am. That would have been tight getting a car.

Hey, what's one more worry right? We do have full covereage as its a new car, plus rental insurance. However, we are going to have to get a new car seat, as technically, its been through an accident even though Loki was safe at home.

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Loki, however, had gone to bed by the time Peter got home. And, he asked about Loki's neupogen shot. Of course, with everything I had forgotten. So, we had to wake the little guy up for his shots. It was only 9pm, but still...can you imagine being woken up from sleep just so you could get some shots? Poor guy. I felt really bad. But, Peter cuddled him, and played with Loki for a while; then, we put him back to bed. He has been sleeping since.

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Also, the Loki Games, a benefit held in Appelton WI, was a resounding success. I have been told that everyone had a really good time!!!!

Peter and I wanted wanted to send a heartfelt Thanks to everyone who attended and/or participated in the Loki Games!!! THANK-YOU!

In addition, we wanted to say Thank-you to everyone involved in the planning and organizaiton of the Loki Games. Peter and I really do appreciate you efforts and are touched by your enthusiasm and generosity!!!!

~A very tired, but relieve wife and mom

Evening:

Peter got into a car accident tonight. He says he's okay, but I haven't seen him home yet. A friend is going to get him at the repair shop. We are without a car for now. But, at least Peter says he's okay. I think I still may make him go to the doctor to get checked out, as both airbags deployed, and the front end is damaged....

We have Loki's radiation therapy appointment tomorrow. I will let you all know how that goes, but as mentioned, I expect Loki will not be getting radiation.

Alicia

I posted new Pictures of little Loki, including his Halloween Costume....Winne the Pooh.

Good Afternoon:

All is going well with Loki. Loki is very active, and quite talkative, in a toddler way. He is in very good spirts as well.

Updates:

Loki recived his Topotecan/Cyclophosphamide apt. Tues. 16th, and it went very well. We got home by 2pm

Friday 19th:

Loki got his Vincristine and we found that his counts were low. He was neutropenic and his platelets were 220, which is within normal range, but low for him. Due to the blood transfusion on Monday, his hemaglobin was 9.6.

Sat. 20th: We left Loki with a baby sitter. And, he didn't cry! not once....my baby is growing up. Loki is still pushing through 4, yes, that's 4 more teeth. All four on the front top gum. Three teeth have broken though, and the fourth is close.

Monday 22nd:

We had a very very busy day today. Peter had an allergy apt, then we went and got our picture taken over in Pediatric Oncology by Flashes of Hope. They took family pictures!!!! Black and White!!!!! I can't wait to see them. It was a big thing, with TV, radio, and newspaper interviews. Didn't know it would be that busy.

Loki had another blood draw: hemaglobin 8.6 (down), platlets 104 (below and down), and white blood cels (0.65, very very neutropenic). So, they want us to bring him in on Wed. to get his counts again, to make sure he doesn't need a platlet and/or blood transfusion.

We then we to his "well baby" visit at the peditrican. They had us go directly to a room, and avoid all other children, as any fever will place Loki back in the hospital due to his neutropenic status. Loki's development is right on track.

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We don't have a surgery date yet, but I am going to email his surgeon today, to see if I can get a heads up. This not knowing is driving us nuts. We are anxious, and would really like to know when, so we can prepare ourselves.

Good Evening:

Loki's chemotherapy is going very well. Loki went into the doc on the 12th to be hospitalized for 3 days, then 2 more days outpatients. Vincristine, Topotecan, and Cyclophophamide.

The first three days in hospital went just fine. Loki had alot of energy, and walked around just as fast as his little legs would take him. However, he was tethered to an IV pole.....so we had to be careful. Sometimes, he moved faster than we could compenstate, and the IV pole acted like an anchor. Boom, right on his behind. He had no adverse reaction to the chemo, no vomiting, nor fever. So we went home Sunday night as planned.

Loki saw his little friends CeCe, a 16 mth old girl with neuroblastoma attached to her intestine. Cute as button, and all smiles. She was doing very well when we left on Sunday, but they are in the hospital until at least Wed of this week.

Today, we had our first of two outpaitent chemotherapy days (second is tomorrow). Last Friday, Loki's hemaglobin was 8.8. Not the best level going into chemotherapy, but not low enough to require a transfusion. This morning it was 8.5, and would most likely continue to drop; therefore, Loki did get another blood transfusion again. This was his third. So, hopefully, his hemaglobin will now stay strong throughout this treatment.

He is not yet neutropenic, but may be the weekend, or early next week. His counts are 3.82, and he is considered neutropenic when his levels drop below 1.0.

The yeast infection "appears" to be clearing up, but we had that happend before, only to have it flare up again. I really hope the diflucan does it this time. I would feel better about him going into surgery without an external infection.

We still do not have a date for surgery, since the docs still need to plan what they are going to do. We did ask for assistance in arranging a second surgical opinion regarding the tumors invasion of Loki's urinary tract, and what surgical intervention will be needed. One of Loki's doctors has agreeded to send his scans to a friend at the Mayo Clinic for his opinion. We will hear from Loki's urologist and surgeon on September 29th. Sending the scans out for second opinion early the week of 29th shouldn't delay any surgical intervention, unless they indicate a different surgical strategy.

Radiation: Still waiting to speak with the radiation therapists. However, we have heard through the grapevine that Loki may NOT be getting radiation, at least, not quite yet. The doc's are very worried about the potential side effects and rightly so. The side effects of radiation at this age group, and in the location of Loki's tumor, are bleak to say the least. Yet, we are nervous about this, as research studies have shown that radiation is VERY important to preventing relapse and reoccurrance of these tumors. We will have to wait to hear want the docs say until the 24th.

*******************Our Schedule****************************************
Tues 16 Chemo all day
Friday 19 Chemo
Monday 22 Pediatrics Apt - Well Baby
Wed 24 Radiation Therapy Apt
Fri 26 CT Scan & Chemo
Mon 29 Urology Apt

Peter has an allergy apt on the 22nd, which may be moved to the 29th
I am supposed to defend my Master's on the 25th.

Thus, I may not get a chance to post again until this weekend, or at least until next Monday night.

Good Evening:

Loki is doing very well. His chemotherapy went well last Friday, and he has been a typical 1 year old all weekend long. Getting into everything and continuously testing his limits!!!

His diaper rash (yeast infection) has flared up again. I have got to get him to eat some yogurt. The doc gave him a prescription for a stronger dose of diflucan and more Nystain Ointment (Vaseline type). I hope this will do the trick.

Otherwise, Loki goes in for his next round of chemo this Friday (9/12) for 5 days (Topotecan/Vincristine/Cyclophosphamide).

We have lots of doctors appointments coming up as they prepare for Loki's surgery. He will be seeing everyone, from radiologists to urologists to oncologists.

We still don't have a set date for his surgery. However, I expect that the date will be set very very soon.

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Loki is doing very well. He is active, trying to run, playing, laughing, talking, and generally being a great little boy. He does have his cranky moments, but I think that is more from the 4 teeth coming in at once, on his top jaw!!!!!

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On Sept. 20th, Loki's cousins, great-cousins, great aunts, and other family members are holding a fundraiser in Appleton, WI. Peter, Loki, and I just wanted to say THANK-YOU to everyone involved.

In addition, I know that family has helped raise funds for Loki's medical expenses at the Jensen Family Reunion, around Appleton and Waupaca through coin cans, at a Brat Fry, and through fundraisers at their place of work. Thank-you everyone!! Peter and I appreciate your hard work, generosity, and love toward our son and getting him though this difficult time.

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On a somber note, tomorrow is 9/11 please say a prayer for all the familes who lost someone during that dark time.

Good Morning:

This weekend went very well....our Labor Day was dreary and raining, so we spent it indoors. Quiet family time together. Loki and I "read" a few of his "Blue's Clues" books together...."Boo Boo" as Loki call her.

Loki is doing well. He seemed to have a couple pain episodes during urniation, so I am going to have to keep an eye on that. Heis abdomin definitely looks much smaller...pants that would fit him perviously due to his tummy, don't fit very well now. His weight, however, continues to hover around 19-20 lbs, so I know it isn't that. His broviac site (chemo therapy line) looks like it is continuing to heal well. We have been very fortunately that his broviac hasn't been infected or sore. Sometimes that happens, even with the best of care.

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Loki "demanded" some of Peter's chicken noodle soup last night. It was quite funny to watch....Peter was trying to eat, and Loki wouldn't let him, unless he got some first. I am pleased to see that Loki is actively trying to feed himself as well. Not the best control and very messy, but he wants to take the spoon, put it in his food, then "try" to put it in his mouth. Now if I can get him to give up his bottle.

Loki's next doctors apt is on Friday for his Vincristine. Then, the following week, we start Loki's last chemo round (3 wks) before his surgery. I am excited and nervous. I know its only been 9 weeks, but it seems like Loki has been through so much.

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