Loki's Journey

Loki's counts were all up, so no transfusions required. White blod cells are fine, hemoglobin is good, and platletes are on the rise.

So, that is that. Loki is now off-treatment. As mentioned before, he will get his broviac removed on July 8th. Then, be seen in clinic in August, and again in September for 3 month scans.

I can't even being to put into words the roller coaster ride the last two weeks have been. It occurred to me earlier today, that Loki's central line will be removed one year to the day, that he was initially admitted to the hospital for a mass in his abdomin.

A few days later he will be 2 years old.... he began chemotherapy on his birthday last year, right after his party was over. Peter and I were so scared, and to be truthful, we still are. It's rather overwhelming to think about it all.

He is growing quite quickly, more than one person over the last couple of days, has asked if he has suddenly gotten taller, and we think he has, not by much, but it is noticable. His vocabulary is improving, and he is getting very good with a soccer ball.

Well folks, I have been up since 2:30am this morning, thinking...couldn't sleep. Been kind of an insomniac for the last couple of days....alot of things weighing heavily on my heart and mind. I feel that I have made peace with all those questions, doubts, and fears.

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I am still going to maintain this weblog since I think it will be a good way for people to see how Loki is growing, how he is doing. Our families enjoy the pictures....and have requested many more.

Good Morning:

We are doing well. Loki is probably getting quite low on platelets. He is brusing fairly easily, finger marks, for something as simple as holding his ankles while changing a diaper. I hope he does not required a transfusion, but I suspect that he might. He hurt his head last night, and now has the BIG purple bruise on the back of his head. OUCHIE.

Loki does have a nurses visit today to check his blood counts. I am hoping everything is okay, and the brusing on his head, is normal, seeing that he got hit in the head with a plastic swing, becuase he walked beind the swing set when someone else was swinging. SIGH...long story.

Loki's central line is scheduled to be removed July 8th. It is not necessary to have it removed so soon, but since he has already had one line infection (back in April), the doctors don't want to risk him getting another one, especially if the line is not being actively used. Peter and I both agree.

He is definitely becoming a two year old. Oh my gosh, could someone not have warned me that he would be this moody.... I love him dearly, but we are just getting to the tantrum stage. It has not gotten really bad, but I think that it is coming soon.

I also think the neupogen is hurting his legs. They are sore, and he keeps telling me "owie". The scans were all clear, so it must be growing pains coupled with the neupogen.

Other than that, I can say Loki loves the outdoors. When we picked him up from daycare, aside from the swing incident, he had been outside almost all day, and he did not want to go home, let alone get in the car.

I just read today's update on Ian's website.

Loki's friend Ian passed from this world today, Father's Day, and earned his wings.

Good Morning:

Lots of things going on.....

I am very sad. Ian is not doing well. His parents and doctors are trying to make him comfortable; he is on morphine for pain. It breaks my heart. And, sometimes, I just can't find the words.

Please keep Ian and his family in your thoughts and prayers. I guess I just don't understand why our little ones need to suffer, when they should be the light and joy. Ian went to the beach this past weekend, and he seems to have had a great time. I can only hope and pray that he will get to visit the beach again soon. Please visit his site, and leave message of love and support, for his parents. They are being faced with a decision that no parent should have to face.

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

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Loki is doing very well. I recieved word last night from his lead oncologist that the MRI of his brain and the MRI of his pelvis are both CLEAR. Therefore, the little guy truly is off-treatment. So, what's the next step?

Loki may still need platlet or blood transfusions, so his broviac will stay in for about another 2-3 weeks. After that, the doctors will remove his central line (broviac)in a short surgery. Loki will have a blood draw from his arm about once a month to check his counts; however, the central line is just too much of an infection risk to leave it in, so out it will come.

Loki will see the doctor once a month, and have CT scans every three. He will be on some of his meds for up to 6 mths off treatment. He will not be able to make up all the immunizations he missed for about one year.

In the meantime, we are to watch his gait to make sure his hips are developing normally. In addition, the plan is to have Loki's stoma internalized sometime between his 3rd and 4th birthday; but we will cross that bridge when we come to it.

Loki is scheduled to see the doctors on Monday to check his blood counts. We had a bit of a scare in the hospital. On June 14th, the doctors told us that his blood counts we DOWN, already neutropenic and platlets really low. He still had two days of chemo to go. However, two subsequent blood draws on the 16th showed more stable, normal blood counts for Loki at this time. Whew. Loki's bone marrow is getting tired, and I was just amazed that it would have dropped so fast. But, as I said, I don't if it was a lab issue, or heprin in the sample, but as of Wednesday his counts were okay.

The hernia turns out to be a non-issue. None of the scans showed any abnormalities in the area in question. So the doctors believe that it is just the way his body is depositing fat. But, of course, we are to keep an eye on it, and report any changes to the docs.

Just a quick update.....

First, please keep Ian and his family in your thoughts. Ian had a great weekend at the beach! But, his blood is growing an infection. His parents have been given a tough decision, and one that needs all the love, prayers, and support we can give.

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Loki has been in hospital to receive his final chemotherapy treatment!!!! His off-treatment scans began yesterday, and I am very pleased to report that they are CLEAN. The CT and bone scan show no evidence of cancer. I have been told I can use the word "remission". Loki has MRIs set for tomorrow. The doctors expect them to come back clean as well.

ALicia

Hi everyone!

Well, Loki "appears" to have recovered from his double ear infection. We will see tomorrow if that is indeed the case.

Loki is set to be admitted tomorrow for 5 days of chemotherapy, and his off-treatment scans. Hopefully, he will be admitted.

We are all doing well. Loki has been having a great time outdoors all week long, his little head is tanned. Plus, he hair is growing back, but I am afraid that might not last too long. But, then again, it should grow back fairly quickly.

I wanted to ask everyone to continue to pray for little Ian. I visted in website just little while ago, and read that his tumors continue to grow, and have spread beyond his pelvis into his lung.
Please keep him in your thoughts and prayers.

Good Morning!

So, yesterday was fairly uneventful. I took Loki in for his pre-admission checkup, only to find out the reason he has been so cranky all week....a double ear infection. So, no chemotherapy for Loki. It will be delayed until next week Friday, but the schedule for his scans still stands.

Poor guy, he has got the green nasal drip too. Not a happy camper.

Other than that, we are doing well.

Loki's "possible hernia" was examined by his oncologist today, and she is still concerned, but not so much as to push up his scans. However, that region will be evaluated based on the scans to see if it really is just fat or something else. I am hoping and praying for just baby fat. It is not hard, or red, or painful, but it is definitely noticeable.

Good Morning!

Things are progressing well. We have been in and out of town over the past few weeks, so posting has been poor on my part.

Loki is doing very well. He is running, jumping, skipping, taking flying leaps off of furniture... He learned the word "More" over the weekend, and is definitely eating more consistently.

Loki is currently scheudled for his final chemotherapy starting June 4th, and ending June 8th. He will have end of treatment scans over the week of the 14th-19th, and boy are there a lot of scans. We have requested an additional MRI of the brain to rule out any potential problems there. So, the little guy will get another CT, a chest Xray, a nuculear med scan, a bone scan, full body MRI, and finally, a head MRI. UGH. He will be sedated for most of the procedures, and they will occur over a 3-4 day period.

When the all clear is given based off those scans, Loki will be considered off treatment. Also, his broviac will be removed shortly after that, to remove that infection risk.

Until then, we continue with therapy. Please keep him in your thoughts.

Other than that, we think Loki may be developing a hernia, just left of his navel/surgical incision. Its a raised area about a half dollar in size, but it doesn't hurt him, nor is it hard or red. We went into the ER, and they directed us to see his surgeon. So, he has an appointment tomorrow at 3:30pm. I will let everyone know.

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Unrelated to cancer, but important regardless, a very young baby in the family was critically injured early in May. And, spent several weeks in the NICU/PICU. Family members have indicated that he is now home, but I am not sure how he is doing. Please keep baby Fisher in your prayers.