This is a continuation of basically my facebook update's. The blog is much easier to use. I can have REALLY long posts if I want (kidding!). But all kidding a side it is easier to control and manipulate than a social network site ;-) Plus you don't have to be a facebook member to read a blog :-)
Jeremie was diagnosed with Acute Myelocytic Leukemia on 07/13/10. He was life-flighted to LDS hospital the next day. He was not hemodynamically stable (meaning that his platelets were falling and Dixie Regional didn't know if they could handle it). We were given the choice of going to Hunstman or LDS's new bone marrow and transplant / acute leukemia unit. My insurance company made the choice for us. They covered LDS 100% and Hunstman 40%. We feel we are in wonderful hands.
It was thought that Jeremie had Acute Promyelocytic Leukemia (APML) when he was diagnosed, as he was presenting with DIC (Disseminated Intravascular Coagulation) a scary condition in which the body cannot control clotting mechanisms (to put it in its most simplistic explanation...and I'm into simplistic). Basically the treatment for that was high dose Vitamin A along with some chemo. With a 95% cure rate. We could do that!!!
07/15/10- Nope not APML. It is AML with trisomy 8 which puts Jeremie in the "intermediate risk" category. Meaning 50% long term remission/cure with chemotherapy alone. Or 50% long term remission/cure with bone marrow transplant. And of course Jeremie presents with this form of leukemia as "weird". It is most common in men over the age of 65. And usually not with the associated DIC. Oh and their isn't a lot of "literature" to go with this particular gene mutation with leukemia. Yay! (Again, I'm putting it into its most simplistic form)
The decision to go with "just" chemotherapy alone was made. Due to the similar percentage of remission/cure. But chemotherapy alone is a whole lot easier to go through, then getting ready for a transplant. A transplant would require a longer treatment period, along with a 6-10% mortality rate with going through the process of getting ready to have the transplant.
Jeremie's brother Robin was tested to "see" if he was a match. "Just in case" a transplant was needed in the future...kind of like an insurance policy. He wasn't a match :-( But we were told that Jeremie would probably have a 95% chance of finding an unrelated bone marrow match on the registry.
Jeremie went through his Induction chemotherapy like a champ. In fact they were going to do it again! But he started having some problems tolerating antibiotics, developed diabetes insipidus (not really diabetes, but makes you go to the bathroom and feel crazy thirsty...it is a brain thing, not a sugar/insulin thing). Developed 3 different rashes from Vancomycin, Tobramycin and Imipenem. Imipenem was the culprit behind the diabetes insipidus (we think?). So needless to say he did great with Chemo and not so great with antibiotics. He developed a small bowel infection during this time as well. So the poor man was on TPN (artifical nutrition, given through his port or I.V. access). He didn't mind at the time. He didn't have to worry about calorie counts :-)
He spent exactly 30 days in the hospital from 07/13/10 to 08/13/10. He came home for 10 days. It was glorious!!! We had just closed on our new home on 07/07/10 and a week later he was in LDS with Leukemia!!! CRAZY! So we worked a bit on our home, and spent nice time together as a family. It was heaven.
He started consolidation chemotherapy on 08/23/10. That went pretty well. Always a learning experience. He had to see how he would tolerate this type of chemo. Before it was given over 7 solid days, a constant drip. This time they give high dose over 2 hours, stop, wait 12 hours, give it again over 2 hours and then give him a 36 hour break. They do this cycle twice over 6 days. He did become pretty sick the first round. Finally learned by the end how to control and treat the nausea/vomitting. Isn't it cool that he was able to, that this is a possibility?
Brought him home. I was scared to death! I liked the security of the hospital! But we managed! He went a couple of time a week to have his blood drawn and saw our oncologist here in St. George once a week. We had to increase the frequency of blood draws during the week as he did have an instance of very low platelets (8,000, normal is 150-400,000) they like to keep his platelets above 20,000. He seems to feel more ill when his platelets are really low as well.
So before starting the first round of consolidation (there are 4 by the way). He had another bone marrow biopsy. This biopsy came back as "weird". It didn't show any signs of live leukemia, but it was packed with "dead" leukemia cells. Your body doesn't really appreciate having waste built up in it. So while it was good they were dead, why were they still there? And they were unable to obtain "aspirate" from the bone marrow (the fluid that would give us a LOT of information) The normal protocol is to have the biopsy before the first round of consolidation chemo and then another biopsy after finishing all rounds of consolidation chemo. Nope not Jeremie. He had a repeat biopsy before each treatment of consolidation. Each biopsy, except the last one (that is a different story) came back as similar. Dead leukemia cells, and no aspirate. The decision was that Jeremie is "weird". He isn't showing signs of disease. His blood counts come back up after chemo, just as they like. So we move forward.
Part of the recovery process after consolidation is starting on a medication called Neupogen. It stimulates growth of the new white blood cells. That way he can have an immune system. And it does it fast! But there is a major side-effect. PAIN! It scared us both to death when this pain started, as it was just like his leukemic pain he had before he was diagnosed. Learned that it was normal. And after discontinuing the medication for 5 days the pain should decrease. Whew...super scary!!!
We were getting pretty comfortable with how things were going. We didn't have anxiety with the consolidaton chemo anymore. We knew all nurses, and Doc's. We knew each clinic from SLC to St. George. We knew how Jeremie's body responded to the medications, etc. The new normal wasn't so crappy after all. We could do this...
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