Good Morning!!!!
Well, all is well in Jensen land. It is raining here in good ole Cleveland, and is expected to keep raining for several more days. Foggy, cold rain, icky. I was hoping it would be warmer, but nope, its cold.
Loki is doing really well. He is beginning to put sentences together...mostly "I see car", She/he said uh-oh, want this or that. But, it is really neat to be part of this learning process. He learned dice, ice, and cheese over the weekend. And, Peter and I think he said his name for the first time this morning. But, we are not sure.
Okay, so Loki had a slight fever over the weekend while we were in Dayton. It was short lived (<24 hrs), and he has not had one since. He had just received vincristine but I don't think that was it. His white blood cell count was 43,000 which was attributed to neupogen, so we didn't feel he had an infection. He may have the beginnings of another UTI, but then again, maybe not. It is so hit and miss. He will always have bacteria in his urine now, and its just a matter of what type and how large a colony count.
He is getting some sort of cold, you know the whole nose draining, coughing from nose draining type. Loki is not supposed to go into see the doctors until Monday of next week, but I think Peter would like to take him in on Friday, just in case, especially if this cold gets worse, and sooner if he spikes another fever.
Loki has 5 days of chemotherapy next week (April 5th-April 9th). He and I are going to spend all week there (probably 9am - 5pm), as outpatient treatments, as Loki doesn't have any daycare, and we need the weekends before and following for family things. It will be nice, but very hectic and busy.
Loki does not sit down....not for a second. He is always on the go. We are thankful but boy, can it be draining.
We applied, on Loki's behalf, to an Ohio state program called BCMH, where if accepted they will help cover the medical costs of Loki's treatment. He was accepted!!!! Now I just have to sort thru the charges and determine which ones the BCMH program should cover, and who to contact to ensure that the hospital charges are rebilled properly. I shouldn't have to do this, but why wait until the hospital "gets around to it".
Loki has the following treatment schedule left:
April 5 -April 9th: 5 day Topotecan, Vincristine, Cyclophoshamide
Wk of April 12th: Vincristine
Wk of April 19th: Gone to MN
Wk of April 26: Vincristine
Wk of May 2st: Overnight, Vincristine, D-actinomyocin, Cyclophosphamide
Wk of May 10th: Break week
Wk of May 17th: Break week
Wk of May 24th: 5 day Toptoteacan, Vincristine, Cyclophosphamide
Wk of May 31st: Break Week
Wk of June 7th: Break Week
Wk of June 14th: CT Scans, and final assessment
This ends Loki's protocal, and as long as his CT scans keep coming back clean. This should be the end of his chemotherapy. Loki will be followed very closely for several years to determine if the cancer is still gone, and to determine if there has been any orthopedic injury to his pelvis and hips from the radiation. He will most likely have 1-3 more major surgery to face before the age of 15 yrs. One to rebuild, internalize his urinary stoma, so that it is more of a port, which he will have to learn to drain. And, other surgeries related to the bones of his pelvis and hips, if needed, and we are praying that they will not be.
Today Loki goes in for overnight chemotherapy, and his last 12 weeks of chemothearpy begins!!!! Tonight is Vincristine, Cyclophosphamide, and D-actinomyocin.
His schedule for the next twelve:
This week: Overnight
Week 2: Vincristine (outpatient)
Week 3: Vincristine (outpaitent)
Week 4: 5 day Topotecan, Vincristine, Cyclophosphamide
Week5: Vincristine
Week 6: Vincristine
Final Six weeks begins:
Week 1: Overnight
Week 2-3: Break
Week 4: 5 days
Week 5-6: Break
Week 7 Evaluation!!!!
We suspect that he might get a "little" delayed as his counts dropped very low after this last 5 day treatment, but we can also pray that will not be the case. He will probably need 1 or 2 more blood transfusions in the next 12 weeks, as well as a platlet transfusion at some point, since his counts became low after the last 5 day treatment.
I must say we are alittle nervous, as this is the point where we were before Loki's surgery last September. Loki has only had 12 weeks continuous chemotherapy, so we are not quite sure how Loki's body is going to respond. It's is more new territory, but I do believe things will go very well. I have no other reason not to.
Loki is doing so very well with all of this. He is currently sitting in his highchair eating a piece of rye with peanut butter, well sort of....he just stuck it to his forhead. BRB.
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Okay, all cleaned up. Silly guy. Loki is doing well. He is running jumping and playing. His next set of CT scans will be early June, at the end of the final 12 weeks of treatment.
Peter and I feel very confident that Loki is going to come through this a very very strong and energetic young man, but we still ask for your prayers as we head into these final 12 weeks of chemotherapy.
It sounds silly, but we are beginning to look forward again, planning for things in the future, and that is such a nice feeling. When Loki was diagnosed we had been kicking around the idea of getting a house, we are again, actively persuing that dream! We are going to start looking and takinig home buyers classes very soon. I so very much want a yard (more for my personal sanity, as this boy is activity with a capital A) for Loki to run and play in.
Thank-you all again for being there for us, you are all wonderful loving and caring individuals
Evening Everyone!
Loki is doing well. He has a two week break off of chemotherapy. His treatment SHOULD conclude in the next 12-14 weeks!!!!! He has two rounds ( 6 weeks each) of chemotherapy left, then scans and a final assessment. After that, we are on maintance, with scans every 3 mths (or so) for the first year. Then, 6 mths for the second, then once a year after that, with this particular type of cancer, he needs to go 5 years with clean scans before he is declared cancer free.
On Monday, Loki's counts were good. He had high hemoglobin and hematocrit, but was slightly neutropenic, and his platelets were low 68 (50 is cut off for transfusion). So he was to come back tomorrow for additional blood counts to make sure he didn't need a transfusion.
Well, as fate would have it, we went in today. His platelet count was 78 (not high, but higher), and typically, once the platelet count begins to come up, it continues to go up. Also his white blood cell count was great, so we got the go ahead to stop Neupogen (stimulates white blood cell production) early at day 8 instead of finishing his 10-14 day course. So no more shots for Loki, at least until the 13th of March .
So, why did we go in today? Well, I think Loki may be getting another urinary tract infection. His docs took a sample for culture and we should know if it grows anything in the next 24-48 hours. I hope I am wrong. I also hope he doesn't end up with a fever, but hey, at least his white blood cell count is normal, unlike the last UTI, where they were low.
Loki is cutting all FOUR eye-teeth, ouchy ouchy ouch. Can you say CRANKY toddler? Three teeth are already through the gums, with the fourth almost there. I suspect it will pop through by Friday.
So who knows, the crankiness could be teeth, or a building UTI.... my vote is for the teeth. If he does have a UTI, and NO fever, then all he needs is more oral antibiotic of a type that will kill off the bug. If he gets a fever, then most likely he may have to go into the hospital for 3-4 days of IV antibiotics, so we are hoping for NO fever.
Alicia
