Loki's Journey

Happy Halloween!

Loki went in yesterday to see his surgeon. The abdominal incision is healing very nicely, and the stoma is functioning as it should, urine output is continuous and normal.

Today, Loki has TWO CTs, UGH. The first one was this morning. I forgot he had metal snaps going all the way down the back of his outfit. Um, metal and X ray don't work too well....the tech came in and we tried to "wiggle" Loki out of his outfit without him moving. Both the metal and movement can cause distortion of the CT scan. When we wiggled him, the scan cut off the top part of his lungs.

So we had to get another scan done. I found out during the Halloween parade/trick or treat that he needed to go down for a second one. The second one should be fine though. I also hope they only charge us for one.

Loki participated in hospital trick or treat today. Oh my gosh, try 14 lbs of treats, goodies, and things. I couldn't believe it. We weighed them when we got back up to M33.

We also went to a friend's church for some trick or treating too. Loki made the cutest little Winne the Pooh. I am hoping he had a good time, but his day was long and stressful.

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Loki is going well. He is beginning to show interest in foods other than pediasure, corn pops, and candy corn. He ate some pork chop and mashed potatoes today!!!!!!! Well, technically, he just "chewed" the pork chop, but hey, he actively wanted some so I will definitely take that as a sign his appetite is beginning to improve.

He is now around 18 1/2 lb, and growing. We are supposed to feed him as much protein as we can.

Oh, and his hair is beginning to grow back. His head is covered with all this peach fuzz!!!! I think it's coming in blond.

Alicia

Okay, bad Alicia, no updates in over a week. Sorry, it's been hectic on the home front.

Yes, Loki is doing very very very WELL!!!!

He had chemo last week, and needed to stay an extra day due to increased blood in his urine, but that all cleared up and he is being a Normal 15 mth old. Getting into everything, and pushing lots of buttons, literally, I think the desktop computer's "on" button is going to fall off.

We had an appointment today, and his White Blood Cell counts were over 24, 000 which is TOO high, so I was asked to withhold the neupogen until Wed. when they can recheck him. Too high, means that some kids describe cramping and pain. Loki has been sore, and now we know why. His red blood count was well within the normal range.

Loki has a post-op appointment on Wed. with Dr. DiFiore. His incision has healed nicely and I feel it will not be noticable in several years. This new would sealing technology is wonderful. Disolvable internal stiches and external "steri strips" or shrinking strips of bandage allow great wound healing!!!!!!

He really does appear to be feeling alot better, and it makes me feel so good.

Loki has a CT scan on Thurs. And, we are in the process of rescheduling his appointment with the radiation therapy doctors, since they will not have enough time to review the scans and make a plan. His appointment was scheduled for Friday. It is now next Wed.

I expect Loki will begin radiation sometime during the first two weeks of Nov. Duration is not determine yet, but will probably last through the Thanksgivng season.

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I just wanted to ask everyone to keep Ian in your prayers, his surgery (similar to Loki's) is scheduled for Nov. 6th.
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The pathology for my thyroid tumors came back, and they are NOT cancer!!!!! Just the body's response to my thyroid killing itself. Therefore, no other treatments are needed, except that I need to take synthroid for the rest of my life, but I was doing that anyway.

So, I am doing just fine, and have healed very well. I do feel the scar will be almost unnoticable by next spring.

Hey!

Just a short post to let everyone know that Loki is now HOME! We came home Wed afternoon, and he is doing very very well.

Loki is pathology is still pending, but since he is not starting radiation until Nov. we have some time to wait.

My surgery also went well, and I am awaiting the pathology results.

Afternoon:

Loki is doing very well. His drain came out this morning, partially due to the fact that it
snagged on a chair causing him a lot of pain. That happened at 3am. Now, that it is out, he has soon residual tenderness, but is more comfortable overall.

The doctors think he will be discharged sometime on Tuesday, so we may be home as soon as Tuesday night. However, Loki's eating/drinking is still not up to par, so that may delay his
discharge from the hospital.

He is beginning to try and walk around; however, he does seem to have a fair amount of pain and soreness. The initially wobblely legs he had yesterday, are a little more sure today, but he still steps carefully and slowly. He is very frustrated by the fact that he is not moving around like he had been before his surgery, and begins to cry when his legs don't move with the sureness they once did.

The surgery is NOT supposed to have any long term affect on his ability to walk, so we feel the issues with walking are due to the soreness form the surgical incisions, and him being off his legs for several days.

Loki has a CT on Tuesday, as requested by radiation therapy, and could begin radiation as soon as next Monday. In addition, he may begin chemotherapy as soon as this upcoming Friday, depending on how his incision has healed, and the status of his blood counts.

Back to playing with the little guy....

Good Afternoon:

Loki is doing very well today. He's IVs are out, and his NG tube is out!!!!!!!!!!!!!!!! All that is left is the epidural and the abdomin drain. They should come out sometime on Sat. or Sunday. I expect Loki "may" be approved to go home on Monday, but I might have to do some negotiating, as I myself, won't be available Monday.

The epidural was stepped down to 2.0ml/hr from 3.0 ml/hr, and Loki doesn't seem to be in any major pain. He is active and sitting up on his own, twisting, bending at the waist. He is also smiling, laughing, and talking in his cure 15 mth old way!!!! I am very pleased.

In addition, Loki had a bowel movement yesterday, not normally something to get all excited about, but that means his bowels are "waking up" ahead of schedule....therefore, today....he got to drink clear fluids!!!!! We are at 1 oz of clear fluid every 3 hours. I am so very excited.

The surgery, and now the recovery are going very very well. His belly is tender, and he cried alittle when I had to change the stoma bandage, but he is doing very well.

Now, on another note:

A few months ago, I recieved an email from Brian and Kellie about their son Ian, who was diagnosed with Rhabdomyosarcoma of the Prostate, just a few months before Loki. Unfortunately, the tumor, which was responding, is no longer responding, and has regrown to a size similar to when it was diagnosed. Please keep Ian's family in your thoughts and prayers. Ian's doctors are now suggesting a surgery similar to the one Loki just went though, and my heart just goes out to their whole family.

Please visit Ian's website for more information:

http://www.caringbridge.org/nj/ian/index.htm

Alicia

Hi All:

Really great day today. Loki is out of the PICU and down on M33 at the Cleveland Clinic!!!! A regular floor.

Loki is still hooked up to the epidural to manage his pain, which he needs. We asked the pain management team to up his dosage of meds to cover the break-through pain he was experiencing, since the PICU staff needed to use morphine and other drugs to help him. We would rather he be alert and looking around, than sleeping or drowsy. It has appeared to work.

Peter and I got to hold him tonight!!!!!!!! And, that was the best feeling in the world.

He still has the abdominal drain, and the NG (naso-gastrial) tube. But, those may be coming out tomorrow. In addition, we expect him to be started on IV nutrition tomorrow. However, no fluids or food by mouth is allowed until his bowels begin to move again. His urine output has been wonderful, indicating that his kidneys are functioning normally.

Loki is scheduled for a post-operative CT scan on Tues Oct 14th to determine the field (area) for his radiation therapy. Combined with the final pathology report, the radiation therapists will determine how much radiation Loki will recived and to what area of his pelvis and abdomin. The radiation could begin as early as late next week.

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Well, some may know, others may not. I, myself, am having surgery on Monday, October 13, 2003 to remove my wayward thyroid (underactive), as I have several small tumors. Their biopsy came back as "suspicious", meaning they may or may not be begnin. The doctors need to remove the thyroid and check for invasion of the tumor into the blood vessels.

The surgery should be short with an overnight hospital stay. Wish me well, and that the pathology report comes back benign.

Therefore, I will probably have Pat or Jamie post updates on Monday, Tues, and maybe, Wed. of next week, depending on how I feel.

Evening:

I have a few minutes to post. The nurses have all the parents leave the PICU floor from 7am-8am, and again at 7pm-8pm for shift change. And, I wanted to do some thanking.

We wanted to thank Anu, Deb, and Matt for bringing such a wonderful lunch yesterday. And, also thank everyone who helped make that wonderful lunch possible. We really appreciate your thoughtfulness and generosity. There was so much food. It was really comforting to know you all care about Loki and our family so much.

We also wanted to thank everyone who could come and sit with Peter and I during Loki's surgery. Pat, Larry, Jamie, my mom Laurie, and our friends Kelly, Mike, Anu, Matt, Deb, and Dave. In addition, thank-you to all those who wanted to come, but couldn't, thinking of Loki and being there for him in spirit. Thank-you all we were really glad you could be there.

In addition, we wanted to thank everyone who prayed and thought of our son to help him through this surgery. It helped, I really feel it did. We had the best possible outcome, all things considering, and it is getting better hour by hour.

Loki is more alert now, and still resting comfortably. He did have a bout with pain, and they gave him some medication to relax. He is alert, but not talking yet. He keeps raising up his little hands for a hug, and for us to pick him up, but we have not been told we can quite yet. The incisions in his abdomin need a little longer to heal. The thought is that if he does come down to M33 tomorrow, then he will not need to be hooked up to the heart monitors and other monitors. Peter and I may get to hold him them.

Right now that is the hardest thing in the world, seeing your little one stare up at you in discomfort, wanting to be held and cuddled, and not being able to scoop him up and hold him close.

I am planning on staying up in PICU tonight. Pat stayed last night so that Peter and I could get some sleep. There are no beds up there, only a windowsill with a padded cover. OUCH. But, at least, I get to be in the room.

HI!

Pat and Jamie posted yesterday, and we just found out it did not post correctly.

YESTERDAY:

Loki's surgery lasted 10 1/2 hours today, including surgery prep, the surgery itself , and prep to go up to PICU. Loki is currently in PICU, resting for tonight, and possibly for several days. He does have a breathing tube in, but it should come out sometime tomorrow. Also, he has an epidural for pain management, and is on morphine for the time being. He really does look very good.

The surgery went very very very well. They did have to take the bladder and prostate, but the tumor is GONE GONE GONE GONE!!!!!! All of it. The doctors have told me the initial pathology on the surrounding tissue indicates a negative margin, which means no VISIBLE tumor cells. The darn thing is gone, and I want to jump for joy, crying, and scream all at once.

Loki is doing well, and resting. He looks really good. He did have several blood transfusions, and may possibly need another tonight. But, the surgery went smoothly, with no problems.

I am heading to bed soon, as I got up at 5 am this morning.

But I wanted to let you know...those prayers worked. They tumor is completely gone, and his bowel is intact. He will still need radiation and chemotherapy to make sure any "trace" cells in his body are destroyed, but the doses will surely be less now that the tumor is completely removed. The follow-up radiation and chemothreapy are due to his type of cancer, and standard practice.

The surgery went best case scenerio, and better than I had hoped.

Thank-you everyone...Thank-you

TODAY:

Loki is doing very well today. Last night there were no problems in the PICU, and today has gone smoothly. The doctors began weening him off the ventilator this morning, and he came off the ventilator at around 11am, and is currently breathing on his own.

He did appear to be in some pain this morning (ALOT) when they removed his abdomin dressing and stoma (urine output port) dressing to change them. He recieved some Morphine at that time.

Since the breathing tube has come out, he is resting comfortably, and the doctors have not had to give him any more additional medication. He does have an epidural with some narcotics in it, that is continually being given, so he is a little drowsy, and drugged. However, he periodically opens his eyes, and spent a 15 min stretch looking between Peter and I, while trying to talk. He is a little hoarse from the breathing tube.

Other than that, he does not appear to be having an significant internal bleeding or drainage. And, his urine output is excellent, with a clearer color than expected. Finally, the doctors noted bowel sounds this morning, and those were not expected to return for a day or two.

He is doing wonderfully. I left him upstairs in Larry's care, all cuddled into bed, with a soft snuggly bear, named Granola. Thank-you Sarah!

Oct. 6, 2003 4:30 pm

GREAT NEWS!!!!!!! He is still in surgery but they have removed the entire tumor that weighed roughly 1 1/2 pounds approx. Was about the size of a huge orange. Had one positive margin (cancer cells found), but after taking an additional margin all fields are now clear. Which means that at this time no cancer cells remain, which will help with decreasing the amount of radiation needed. Did loose the entire bladder, and prostate, was attached to the colon, but had not invaded it. So they were able to save the colon. All nerves to the legs appear to be functioning properly. Kidneys are working fine. He will remain in surgery for about another hour to and hour and a half. Then he will directly go to ICU. Alicia will update after she sees him.

Auntie Jamie and Grandma Pat

Oct. 6, 2003 3:30pm

Just a note, Loki remains in surgery all reports returned say that he is doing well but he will probably be in there for a few more hours. There has been no complications. Peter and Alicia are holding up as well as can be expected. For to follow as soon we know more.

Jamie and Pat

Evening:

Thank-you everyone who offered to donate blood for Loki. Unfortunately, they want you to come into the Cleveland Clinic labs, and pay a $127 handling fee, which is charged to either you or your insurance. YIKES!

I have A+ blood, and couldn't donate, while Peter has O+, but they wouldn't take his blood, becuase of his Sarcodiosis. GRRRR. Ah well...they said their supply of O+ blood was adequate. But, it makes me sad....that they wouldn't let Peter donate, esp. since his doctor said it wouldn't be an issue.

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Well, we have been admitted to the hospital since 9am this morning. Loki's bowel prep is done..THANK-GOODNESS....what a MESS that was. Think lots of baby poop...all over....repeatedly. BLECH!

The nurses still need to start the antibiotics to sterilize Loki's intestines. But, that should begin shortly.

Oh my gosh, LOKI has so much energy tonight. He is RUNNING everywhere. I am so surprised. You would think the poor guy would be starving, since he has been on clear fluids since 10am, and been pumped full of fluid through an NG (Naso-gastural) tube.

Loki also had a chest X-ray this morning to check the status of his lungs, and they appear to be just fine. I guess it's standard procedure with all major surgeries.

Loki's surgery is still set to begin around 8:30am tomorrow morning.

Afternoon:

Loki is doing well today, running around, getting into trouble. My mom arrived earlier today with no problems. Peter's parents and sister are set to begin driving to OH tonight.

We have taken a room at the Cleveland Ronald McDonald House. Our room information and telephone numbers are as shown below. However, we will not be in the room until a little later tonight.

Loki Jensen
Ronald McDonald House of Cleveland
10415 Euclid Ave
Cleveland, OH 44106-4709

216-229-5758
Room: 224

If volunteer on duty, just ask to be transfered to room. If no volunteer on duty, you should be prompted to type in the room number, to be transfered to us.

Alicia

Good Evening:

We met with Dr. DiFiore today. He gave us some more information about the surgery and what to expect. In addition, I have called the Ronald McDonald House and put the Jensen family on the waiting list, so once I find out what those #s are, I will let everyone know.

So here's the schedule:

Thurs Oct 2nd:

Peter and I have an appointment with the blood bank to see if we can bank some blood for Loki, who is O+. Boy, I wish they would have said something alittle sooner about that, since I know lots of people had asked that awhile ago.

My mom is arriving from MN at around 10:20am.

Friday Oct 3rd:

Peter's parents and sis are arriving from WI sometime early Friday morning.

Sat Oct 4th:

RELAX

Sunday Oct. 5th:

Check into the hospital at 9am. They are going to give him a chest X-ray to assess his lungs, give him several blood tests, and a bowel prep to clean out his intestinal tract. We should be back up on M33 for that, but after his surgery, he will be in the ICU.

Monday Oct. 6th:

Loki's surgery is scheduled to begin at around 8:30am, I forgot to ask if that is the actually OR start time, or if that is the beginning of Loki's OR preparations. The surgery is expected to last around 8 hr, possibly longer.

I will try to post online updates as we can...I don't quite know how I am going to be. I may have Pat or Jamie do the posting; I still need to ask them. The doctors or surgical nurses will be updating us every 1 - 1.5 hours on how the surgery is going.

Loki will be on a ventilator in PICU after the surgery, for awhile. We are hoping not too long, but we just don't know. We were told to expect 5-7 days in the ICU, and possibly another 2 weeks or so in hospital, until his bowel begin moving normally again, and he is "eating". He will most likely have an epidural and pain medication for several days, to help with pain management.

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Well, the 2nd opinion from Mayo Clinic came back.

They agree with the surgical intervention suggested by Loki's doctors. They feel that if the bladder would be spared, and left in place, the dose of radiation required to irradiate Loki's pelvis would be unacceptable...in terms, of both tissue damage, and harm to his bone development. Therefore, they suggest removing the bladder, prostate, and any other affected tissues, thereby, lowering the required radiation dosage, and shrinking the effective field of radiation.

Surgery will take place Monday, Oct. 6th at the Cleveland Clinic in Cleveland, OH. Loki's surgeons will be Dr. DiFiore (General Surgery) and Dr. Ross (Urology).

We meet with Dr. DiFiore today at 3:40pm. We met with Dr. Ross on Monday.

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On a side note, Loki has a bit of a cold, so one of his oncologists have asked us to bring him by before we meet with Dr. DiFiore so that she can take a look at him, and prescribe anitbiotics, if necessary.