Loki's Journey

Oh, my baby is growing up...

This morning when we left Loki at daycare he did not cry. He took Karen by the finger, and lead her around her kitchen. Then Peter and I said, "Loki were are going bye-bye, can we have hugs?" And, he gave each of us a hug and lead Karen out of her kitchen to the front window so he could watch us go bye-bye. He is doing really well at Karens.

He spends three days a week there (T, W, R) from 6:45am until about 5:30pm. It's out of our way, opposite the direction we go to work, but she is doing a really good job.

Loki is eating more! Last night we went to Applebee's, just Mommy and Loki, since Peter had a seminar for work. Loki and I sat on opposite sides of the table. I gave him alittle plate of chicken from my salad, but NO he wanted to get his own. So, I spent all of dinner with the salad plate between us, as he and I ate salad...he mostly just chicken. But, it was great...here was this little kid digging around in a salad bowl with his own fork, trying different things!!!!!!

Then, we dessert came (I splurged got us some carmel cheesecake), Loki discovered...that he liked cheesecake. He spiked the cheesecake right in the center lifted it up and ate it like you would an icecream cone...all the tables around us were laughing so hard...it was great. Yes, though .... I did get some of my cheesecake....but then we had to play "pass the fork" in this game....Loki eats his piece of cheesecake, while mommy gets a bite of hers...then takes another piece with her fork....has to give that fork to Loki, he gives her his fork back, and repeat...hence, the name "pass the fork".... he ate about 1/2 the cheesecake, which amazed me.

Oh, and at 1:30am this morning...I found my son...smushed under his toddler bed....What is with that????? Strange.... He must have crawled under there, then fell asleep...it was too weird. But, he's okay, he was just a little shaken.

Good Morning!

Just a quick update. All is well in the Jensen Household. Loki is doing just fine. He still has that pesky cold...with the continuously running nose, and drooling mouth. But, the cough has gone away!!!! He has not gotten any fevers either. Hopefully, the runny nose will go away within the next few days.

I am happy to tell everyone that Loki has been eating more regularly. Not a whole lot of food, but regularly. He seems to enjoy rice, apples, and applesauce right now. Snacky type foods are chocolate, and cheetos, not my first choices, but he will eat them. I am really trying to push the rice, cut up apples, and soup(s) instead of the cheetos.

We rearranged the apartment so that Loki has a real living room to play in. Now his slide and picnic table can be out at once, and he has a larger area to play in! Although, I have discovered that he really enjoys coloring on our walls with crayons. I have been told that the Mr. Clean Erasers work wonders, so I will need to pick up one or two.

We are having friends over for a Superbowl Party on Sunday. First time hosting a party since Loki was diagnosed, so I hope it goes well. Sounds like everyone is bring really great food, and I do hope they all have a good time.

Loki has overnight chemotherapy on Friday. I see no reason it will be dealyed as he counts were excellent last Friday, but with this cold, it could potentially end up dropping his counts. Loki's appointment is at 9am, with admission to follow.

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I haven't heard anything more about CeCe or Anna, but I hope to have some more news by the weekend.

Alicia

Good Morning Everyone!

Loki is doing well, but I think he is getting a bit of a cold. He is developing a cough, and sounds very congested. He doesn't have a fever though, but I am going to call his doctor today, and get him to see them tomorrow. Unless, they want to see him today.

That way, I can get his counts rechecked, and they can listen to his lungs.

Other than that, Loki is doing very well. He had a great day at Karen's yesterday. She said that he was running around and playing with the other two little ones. He also climbed up on her lap to watch some cartoons, and relaxed. Then gave her a little kiss on the cheek!

He really does well with adults. I mean, he gets upset when we have to leave him anywhere, is fine just a few minutes after we are gone.

Sometimes when I look in his eyes, he just seems so much older than he is. I don't know if that just because of everything he has been through. But, he seems so much older than he is.

I can't wait until I understand what he is saying, 'cause he defintely knows what he wants...mom and dad just need to catch on.

Last night at bowling, he started dancing to all the songs that the radio played. It was really cute. Loki LOVES all kinds of music. Pop, rap, techno, dance, alternative, salsa. He has his own little dances for each one. And, he has begun to sing. We don't necessarily "know" the words he is singing, and its not to every song, just specific ones. We first noticed it with Jewel's Intuition, then a song by Dido, and last night I swear he was singing to No Doubt. Usually, he just listens to music and dances....but his mouth was moving, and you could hear humming and singing. Maybe little Loki will grow up to be a musician or composer of some sort? Who knows.

Loki is doing well! He had his vincristine yesterday, and that went well. His counts are great. White blood cell count was 900 so its getting low, but the docs feel he is on the up and up, rather than the way down. So I was allowed to send him off to daycare this morning.

He has overnight VAC chemotherapy on 1/30.

Loki is VERY VERY active. He is begining to speak more, stringing a couple of words/sounds together. He defintely knows what he wants, but it's still hit or miss with mom and dad understanding him. But, if you tell him that you didn't quite hear want he said, and could he repeat it. He does! So I know he understands those verbal commands.

Let us see...he is sleeping in the toddler bed with relatively few incidents. Peter or I have slept in with him a couple of times. And, he managed to remove most of the clothes from his lower drawers sometime last night, so I need to give his room a quick cleaning when I get home.

Oh, and my angel decided to color all over my white load (clothes) with a black semi-permanent marker last night. Thank goodness it was really only 5 shirts, but hey, that is 5 shirts right. Two I haven't been able to save....YET. Still taking suggestions.

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CeCe had her surgery yesterday. It went wonderfully. We got a call from her mom Stephanie this morning around 1:30am. CeCe's surgery lasted 16.5 hours, and she was resting in PICU as we spoke. They got the majority of her tumor out. A little piece was left on an artery, but I need to get more details about that. The tumor was not adhered to any major organs or bowel!!!!! I "think" they got mostly negative margins, but I need to check on that. Please pray that the doctors did.

Otherwise, little CeCe will be on a ventillator for the next few days up in the PICU. From my experience with Loki, I hope CeCe's recovery is just as swift and as smooth.

Please continue to keep her in your thoughts, and prayers.

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Ian is having a new central line placed today. I hope all goes well with his surgery. I read that the temporary one came out of his arm yesterday. ACK! But, all went well, and his mom got things under control in a flash.

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I have been contacted by the mom of another little boy Lucas. He lives in FL. He has the same cancer type, and placement as Loki's. It makes me so sad. But, he is doing well. I would like to post his website for everyone, but I want to ask permission for his mom first.

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Anna is doing well. She is still feverish, with temps running as high as 105. But, her mom indicated that they no longer feel the fevers are due to a virus or infection, but are a reaction to the medication she is on. ICKY. I do believe if the fevers are gone for 24-48 hrs, then they will allow Anna to go home. Her mom said she is eating now, and drinking as well. We stopped by briefly yesterday, but she was sleeping.

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Other than that, I graduated CWRU with my Masters in Neuroscience and Bioengineering on January 16th!!!!!! I am going to pick up my diploma today. Then, back to work. I REALLY would love to get out of here by May 2005, but that might be pushing it. Peter and I have been discussing adding an "addition" to our family, but alas, that needs to wait until 2005/2006 sometime. I really want to make sure Loki has a good year or so of clear scans before we take on something like another baby. Plus, I need to be as close to being done with my PhD as possible. ACK! I couldn't even imagine two munchkins running around....not right now.

Oh man, here I am so excited to finally get to post, and I forgot the MOST importmant thing.

Loki had his 2nd CT scans since the surgery in October, and they are CLEAR. No evidence of cancer anywhere!!!!!!!!!!!!!!!!!!!!!!!! YEAH, WHOO HOOO.

He still requires the chemotherapy thru May, but those scans are CLEAR!!!!!!

Plus, he is so very full of energy, running jumping, and playing. We are very very TIRED, and very very Thankful.

Dec 11th....How bad is that. Please excuse the not writing or posting. I feel very terrible about it all.

Loki is doing wonderful!!!! We are so very very pleased with everything.

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So on to Updates!

Loki had his central line replaced on the 11th of Dec. that went very well. His line is giving some trouble when the Oncology staff try to draw blood, it must be up against the vessel/chamber wall. If we have him raise his arms, and giggle...it works just fine. Too Funny.

Christmas was great. Loki had chemotherapy the day before we flew to WI. His counts were great. He had so much fun seeing everyone, and got some very wonderful, and special christmas memories. I wanted to thank EVERYONE for the generostiy, love, and support given to our family this past christmas season, and during these trying and sometimes scary past few months. We love you all so very much.

Yes, I DO have pictures. I have just been very busy (See Below).

Loki came home to what was supposed to be his 5 day VTC treatment, BUT turned out his counts were LOW (280, severely neutropenic). The only explaination we were given was either viral suppression, or delayed suppression of counts due to the radiation. Either way, I am pleased to say that Loki DID NOT get sick, and was just fine. His counts were high enough to begin chemotherapy on Jan 5th.

Loki had chemo from the 5th - 9th, and did very well. We did all the chemo outpatient as there are still alot of flu cases in the hospital and Loki DOES NOT want to get the flu. We don't want him to either. The oncology staff have created a monster. They have this vacuum tube system for transport of samples and supplies (much like the kind used at some banks). Well, they showed Loki how to use it, and he wants to send and receive these tubes ALL THE TIME. UGH, he stands there yelling "GO GO GO" waving his hands, waiting for this tube to get sucked up into the system. When it does, he gets startled, then right away wants to do it again. Oh, I think we are going to have a thrillseeker on our hands.

In the mean time, I have been working with his doctors and the Cuyahoga County to find Loki a suitable home-based childcare situation, so that I could return to work for 3 days a week. Hence, the BUSY BUSY BUSY. Also, hassling with the insurance company and Cleveland Clinic Billing Department has been a frequent and stressful occurance.

We found Loki a childcare provider through Starting Point, which will provide a home health nurse to visit with Loki's provider to train her in his special needs. In addition, due to Loki having chemotherapy and frequent clinic/hospital visits, the county will provide a child educator to assist his care provider in identifying any areas where Loki may need a little extra BOOST such as speech, PT, OT, or anything allong those lines. But, after the educator met Loki, she said (as did his doctors) that his is defintely an 18 mth old with ALOT of energy and spunk.

**Proud Mommy Moment** She even said that if she were to do a full work up on him, she felt he would rank probably around the 20-22 mth group, rather than the 18 mth group!!! Okay, enough proud mommy.

So Loki is now at Ms. Karen's on Tuesday, Wednesday, and Thursday, so I can head back to work. Today is my second day back.

PRAYERS

Please keep little Anna and her family in your thoughts. She has been ill for quite some time due to the flu, and I hope she is feeling better.

Also, Loki's little friend CeCe is having major surgery in NY on Monday the 19th. Please keep her in your throughs and prayers, we will.