Friday, December 31, 2010
Andrew has been admitted to the hospital once again and I think that he is enjoying all the attention from the nurses. He starts his second round of chemo today as soon as they pump him full of fluids (hopefully not as badly as they did last time). We are enjoying seeing our friends again and excited to keep going with chemo so that we can just get it over. Our new concern this round is how to keep him from getting tangled his lines, now that he is more mobile.
Wednesday, December 29, 2010
So his ANC (Absolute Neutrophil Count) was 800 today, up from 600 on Monday. They tentatively scheduled us for Thursday in case his counts went up to the magic number of 1000. This means we may or may not go in tomorrow for his aspirate and Round #2 of chemo. What a thought!
The oncology people haven't called me yet about this. I think they're probably still trying to decide...
Monday, December 27, 2010
Thursday, December 23, 2010
It's been exactly three weeks since we've been home, and we've been loving it! The reason we've been out of the hospital so long is that his ANC (or absolute neutrophil count) is, as the doctors say, "unusually slow" in coming up. That's part of the reason they did a bone marrow aspirate last week--to see if there was anything seriously wrong with his bone marrow that was keeping him from getting white blood cells. They'll do another one a week from today before they admit him for his second round. Today his count was 500, the magical number they usually go by to let you out of the hospital in the first place, and also the magical number that reprieves us of giving him an antibiotic intravenously every 8 hours.
We are anxious to get back in the hospital to get through the treatments as quickly as we can, but at the same time it's been fun to watch Andrew become more mobile. He's rolling over quite a bit now. One second he'll be smiling at me, the next, he has rolled under the Christmas tree with it most of the way in his mouth. He's starting a soldier's crawl, but doesn't really realize what he's doing yet.
Stew's parents will be up for Christmas Eve and Christmas Day. We feel so lucky that they're coming to see us, as they have other kidlets they could be visiting.
Merry Christmas to all!
Friday, December 17, 2010
We just got word today--the blasts they saw yesterday were normal lymphocytic and myeloid blasts in the marrow--they didn't find any cancer cells! We are absolutely thrilled. As far as we are aware, it isn't common for AML patients to achieve complete remission after the first round. For AML, they set a normal "remission" threshold for 5% and call that good enough. This is truly a miracle.
We're still at home and aren't going to be admitted until his counts are higher (his ANC is only 300 as of Thursday), and it's very possible we'll be admitted next week. It's actually quite probable we'll be admitted on Christmas Eve, but man, I couldn't care less. This is the most awesome Christmas EVER!
We are so grateful for all of your prayers. We know we wouldn't be here without you!!! We have so much to be thankful for. I must admit that I've been a bit of an inconsolable grump lately about everything. I've found it hard to be rock-solid in my attitude, but I've been working on it with a lot of help from friends, family, and most especially Heavenly Father. I know we're still not done--4 rounds to go--but it'll be much easier knowing that he's fighting his cancer really well.
Thursday, December 16, 2010
We went in for an LP (lumbar puncture), an aspirate (a sample of the bone marrow), an intrathecal administration of ARA-C (a chemo put into the spine), and an ECHO today (to test his heart). This is all very standard procedure, and Andrew went in and out like it was no big deal. One of the doctors said she would do a quick smear for a look-see to see how many blasts, if any, that Andrew had. A smear means that you take a sample, whether blood or marrow, and "smear" it on a slide.
Next to the cytogenetics, this has probably been the time that I've been the most anxious. The doctor called Stew on the phone and said that she saw some blasts on the slide. Some? Some, a lot? Some some? Some, just every once in a while? Man, I wish I'd had the phone...
It's probably best that I didn't get to talk to her and that I wait for pathology to give us a percentage tomorrow. Since Andrew has blasts in his marrow, he's not in full remission, but they really don't expect that with AML, and certainly not after the first round. I'm really still holding out hope that "some" means less than 5%, which is the cutoff for remission in AML patients.
Andrew has been a tad bit cranky today, but I don't blame the kid. He's cutting his first couple of teeth :).
Well today is the big day when things start up again. We go at 1:30 to get a bone marrow aspirate in order to determine what condition his bone marrow is in. Andrew still has low neutrophil counts but since it has been two weeks the doctors still want to bring him back in to figure out what is going on. Most likely he will be admitted tomorrow (Friday) for his second round of treatment. For Lizzie this time has been quite nerve racking because the results of this aspirate determine whether or not Andrew needs a bone marrow transplant. We are hoping that he has gone into remission and so he won't need a bone marrow transplant.
Sunday, December 12, 2010
I love having Sundays to remind me why I keep going and that I'm really living such a happy life. Oftentimes when I'm going through a rough time, I'll bargain with God and say something to the effect of, "Okay okay, I get what this is like, now what is it you want me to learn so I can be done with this?" My mom keeps telling me that we can't pick and choose the hardships we do or don't want to deal with, and we should certainly not try to tell God what to give us. But still, the question keeps running through my mind like a broken record: what is it I'm supposed to be learning? Even from the start of everything, I feel like many little bits of spiritual insight that I've gained have slipped so quickly away from me. I continuously forget the things that I have started to learn. I suppose that's why this trial is probably going to be with me for much of the rest of my life.
I've been trying to slow down a bit, reading church talks here and there about hardship. Two talks that have particularly stuck out to me that I think about every day, and sometimes many times a day are: "Come What May, and Love It" (the title of this blog) http://lds.org/conference/talk/display/0,5232,49-1-947-9,00.html and the talk "But if Not" http://lds.org/conference/talk/display/0,5232,49-1-439-25,00.html.
As I've struggled with the question of what it is I'm supposed to learn from all of this, I've realized from Elder Wirthlin's talk that I've learned at least two important things. The first is that I've come to understand, at least to some degree, what it's like to have a child that is really really sick. In other words, when I meet parents whose children are sick, I can at least partially empathize with their anxiety and feelings of helplessness. The second is that I've been a witness firsthand to other people's generosity to a huge extent. People close to us as well as complete strangers have gone above and beyond in reaching out to us. I'm trying hard to work on the faith to leave it in God's hands and trust that he knows exactly what he's doing. I'm trying hard to cope with the long-term implications of everything.
A lot of the issues I've had boil down to trust. Knowing that there's absolutely nothing I can do, and that's it's all in God's hands requires a great deal of trust and faith. Elder Simmons' talk "But if Not" has been particularly helpful on this point. Putting it in our own situation: Andrew's going to respond well to chemo, but if not... Andrew won't need a transplant, but if not... Andrew's going to be a healthy happy boy, but if not... We'll still have faith that everything will be just fine, that we're sealed to him, and that we'll have the patience and experiences that make us grateful for the many many blessings that we have. That we are doing this because we know it's the only way we'll get back to our Heavenly Father. How much trust Heavenly Father must be putting in us--trusting us to take care of one of his children!
We have so much to be grateful for! I really wish I had a picture of his eye when it was at its worst, but here are some pictures for comparison:
(at about 4 months)
(right after his biopsy)
And now his eye just looks fantastic:
Anyway, it's been super fun to see him this last week with more energy than he's probably had his entire life. Since his hematocrit has been in the 30s (a measure of the amount of blood that is made up of red blood cells), he's had so much energy. His motor skills and physical development have just skyrocketed since we've been home. Instead of holding his head up for 10 or 15 seconds, he's been doing it for minutes at a time. He's making huge strides with rolling over and crawling (which he kind of does--backwards and in circles). Anyway, so much to be grateful for, as always, and thanks again for your prayers.
Thursday, December 9, 2010
It's been a week since they sent us home, and we're still here! It's great being home, and I'm so glad they didn't make us wait until he had an ANC(absolute neutrophil count), because we would still be in that little room at Primary's... They had scheduled an LP (lumbar puncture) and a bone marrow aspirate for today, but since he had no ANC on Monday and a pithy ANC of 100 today, they have bumped the surgeries until next Thursday. This means that we'll be admitted at the earliest on the 20th of December for his second round of chemo.
I know it sounds crazy, but I really wanted to have his surgeries today for two reasons--one, that prognosis is better when chemo regimens are spaced closer together, and secondly, because I really really really want to know if he's in remission. If he's in remission, it is unlikely he'll need a bone marrow transplant and all the complications that come along with it. We'll be hoping and praying that's the case.
In the meantime, we've felt a bit hypocritical by telling sick people and little kids to keep their distance while Stew and I have both gotten a pretty nasty cold. Andrew seems just fine, though. Stew has a whole heck of a lot of schoolwork to catch up on (2 finals and a huge paper), and even though we've been sick, we're just so happy to be home.
Thursday, December 2, 2010
So we've been doing what everyone here does after chemo's been done for a while... nothing! Just waiting for his counts to go up. Even though his ANC is still zero, his monocytes and bands (immature neutrophils) are picking up pretty rapidly. The attending this week mentioned in passing that if Andrew keeps it up, they'll probably let us go home on Friday. I knew we would probably head home soon, even without an ANC because the other 5-month old in here was gone splickity-split on Monday without an ANC.
So Andrew's scrotum is shrinking again. No one here seems to have a good explanation, so I'm going to say it's on a lunar calendar. A couple of nights ago, I kept missing urology: I went out lunch, and they ran after me and didn't catch me. I ate a can of soup for a late dinner in the parent's room down the hall as the resident stood outside my door waiting for me for 10 minutes. I finally had the nurse call her and transfer it in my room and Andrew pulls the cord out. Someone didn't want me to talk to urology! She eventually said they wouldn't do anything now or even between treatments, but they might go in after all this is over and do some work.... Oh geesh. Talk about a million dollar baby. I'm so glad they said he could resolve it on his own, though, so I'm hoping that between now and then, that's what will happen.
I go through cycles of being okay with Andrew having cancer and feeling okay, but then when I see other really sick kids that are in much worse straights than Andrew or think much about the long-term implications of everything, I get pretty down. So I went over to the Steele's room the other night. Can I just say that I love the families here? Fantastic, really. It's just great having another mom around even if it's not my mom. It's so funny to be sad when people leave the hospital because you miss the company, and the Steeles were almost out of here last Friday, but they're back again--and hopefully not for long. They have such a different set of challenges than we do even though it's basically the same disease. They have the advantage of being able to talk to their kid and assess pain or discomfort that way, but then again, I feel like Andrew doesn't mind being nauseated as much. I've seen him many a time have a huge grin on his face even while he's upchucking breakfast. He just must not feel it like he would if he were a teenager.
Anyway, I just really appreciate so many people who have said comforting words or sent prayers our way. We love you!