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Whew, I am tired tonight. The good news is that Steven made it home this morning. He barely made the methotrexate cut off of .10. We were so happy to leave. As we were taking care of things for discharge, I asked the nurse to look up his CBC (those are the labs they run on him biweekly). His ANC from this morning was 400. So low! You'll remember that it needs to be 500 to be out in public. 400 isn't terrible, it's just that I didn't expect it to drop so low at this point. I asked about him going to school and they said no--not until we see his Thursday labs. Oh, and his hematocrit was lower, too--close to transfusion levels. I'm not sure why, (possibly the awful night sleep I got?), but I got pretty weepy about the whole thing. As in, cancer. I think it is so hard to give up expectations. Plus, I'm confused about why the low number. They think it is because he is getting toward the end and his bone marrow is tired. Well, I can understand tha...

We just checked into the hospital this morning for round 14 of chemo, this time high dose methotrexate. If all goes as planned, he will be able to go home Monday sometime. He is in good spirits today. He has been at school much of the week and even went for an hour this morning before he had to come to the hospital. He's reading a Great Brain book right now (a fun series if you haven't read them). He has gained almost three pounds since his last admission, so they were happy about that. It doesn't surprise me because he has been eating like crazy. After his labs yesterday afternoon, he stayed home from school and did some physical therapy and a piano lesson and all afternoon he was begging for more food--nothing seemed to fill him up. He has been taking an appetite stimulant--it is something like cyproheptadine (I'm sure I've spelled it wrong.) It is actually an antihistimine, but it also increases appetite. The first med he took for this was a low dos...

I have a minute to breathe--the girls are both napping and the boys are both at school. For once this week, I have a little time to myself. It's been a busy week. On Monday, Steven and Andrew both went to school. Getting them off was an undertaking. Our little house was a big mess to start out with, and somehow all the little things they needed had dissapeared. We couldn't find the hat the matched the outfit, or the paperwork that went with his prescriptions, or the right sock, or the right shoe, or the thermometer, or, at the darkest moment--the van keys. Steven wanted so badly to be early, but he was lucky to make it on time. Here is a picture. He may look like he's not that happy and it's because he isn't. He's not a fan of first-day-of-school pictures on a good day, but especially not when he is late. He loved his first day of school. When we first arrived onto the school grounds, some friends from his class saw him coming and came running and sh...

Ahh...summer. Where did you go? Tomorrow the kids start school and I am not emotionally ready. Our summer bucket list is incomplete and even tonight we were outside enjoying the perfect evening far past bedtime. How will we get up and going in the morning? Mostly, how will I let them go to school all day? I think most of my anxiety has to do with Steven's counts. I don't really feel like long explanations tonight, but he is somewhere at a low point and his immune system could be down tomorrow. We won't know until tomorrow evening, or even Tuesday morning. A more paranoid parent wouldn't dream of sending their child to school, but if you could see how badly he wants to go, you might understand my dilema. You would think that he was getting ready to line up at Disneyland, not the fourth grade! Cancer--you won't rob Steven of his first day of 4th grade will you? Tonight I will pray that he can go and will be safe. It will depend on his mouth sores--tho...

Steven had another appointment at Shriners today to try on the mold they have made for his prosthetic. It was an interesting process. Scott had the mold made, but he would come and try it on, or try to put it on, and then dissapear to the shop where he or the technician would saw away at it. We could hear their machines working as we waited. He did this about six times or so, until he finally had it just right. As he moved Steven's foot, he made marks on the heel because it hurt Steven a little there and he will blow the heel out a little bit on the actual prosthetic. I don't really know any of the terminology yet for this, so you'll have to forgive me. Steven is feeling really good right now. Having Doxyrubicin only was a breeze as far as chemo goes. Maybe it is because he compares it to his past chemo experiences, but he did great in the hospital. He ate the whole time and has had no nausea issues since he came home. When he had this combined with Cisplatin, ...

I have so much to say and not enough energy to say it. I am writing from the hosptial--Steven is in for round 13 (just 5 more to go after this). He is only getting Doxyrubicin where in the past he has gotten Cisplatin simultaneously. Just before bed I asked him how he was feeling. "Great. I don't think the chemo has even come down the line yet!" He was wrong, he'd been getting it for four hours at that point. This is a 48 hour infusion, so we should be heading out of here around 5pm on Sunday, give or take and hour. Today was Andrew's birthday and he got the unique experience of having his birthday party at the hospital We had dinner as a family plus Rob's parents on the patio and did cake and presents there. Not ideal, but the togetherness thing was nice. Not everyone gets a helicopter overhead at their party! As we were waiting for his friend to come pick him up this morning, I said, "Andrew, I sure wish I could spend your b...

The leg process has begun! We went to Shriners today and the prosthetist deemed Steven ready to get a leg made. Even though his foot can't be stretched all the way straight yet, we decided that it would be best for his therapy if he could start bearing weight, having something touching his foot to help with the sensitivity and also start learning to walk. This is just a temporary prosthetic, so in the next few months, they will figure out the alignment and slowly change the prosthetic into a final product. So here are a few pictures about the process so far: First he put a sock on, and then ran a tube down the outside of the sock. The tube helped him to cut the cast off after he wrapped it. He wrapped the foot with casting material and then while it was still wet, he stretched Steven's leg as much as possible. As soon as the cast set up a little, he cut it off. The next step is to use this mold to create the plastic part that his foot will rest in. He took a measurement o...

Back in the spring, when school was in session and Steven had been through several rounds of chemo, he was complaining about some homework--a spelling test I think. "It's too hard!" he complained. "Steven, you can do hard things! Look at you, you are doing chemo!" I countered. "Chemo's not hard! I just show up at the hospital and they plug me in. That isn't hard." Okay, so he had a point. I thought--wait until the surgery. Yet, even with that, he rebounded so well and got over his pain and problems so well---life seemed to be pretty smooth. But here we meet the rocky part: physical therapy. Tears are finally falling over here--and not just from him. It is so hard for him to do. It hurts him so badly when he is doing it right. He hates to do the exercises. Currently we are working on a few things. One thing is stretching. The better he can straighten out his foot, the better his leg will work. His good foot stretches very well ...

Addie's favorite Primary song from church has a verse that says: Oh what do you do in the summertime, when all the world is green? Do you march in parades or drink lemonades; or count all the stars in the sky? Is that what you do? So do I! When she heard that we were marching in the Midvale parade for Alex's lemonade stand, she was so excited. She could now answer yes to these questions! Here are some pictures from Saturday. There is something very inspiring about a hometown parade. For me it was even more so to see so many friendly faces of people I love. Thanks so much to all who were involved--it turned out beautifully and I understand was also very successful. That is no surprise, for the amount of work that went into it and also for how good and generous people are. Amazing! P.S. Steven did make it out of the hospital this morning. It was probably the glass of lemonade I brought back for him that tipped him over the edge!

I am happy to report that Steven has held the nausea at bay very well this round. He is eating like a champ and hopefully on a weight gain trajectory that will put him at a safer weight. His diet is atrocious, but calories are the priority and so we cheer about donuts and bacon rather than carrots. Talk about a paradigm shift. Physical therapy is another story, one that needs a whole post of its own. I will try to drum up the emotionaly energy soon to blog about that. Here is a teaser: THIS is hard. This afternoon we took a walk to the patio where we were very lucky to meet a young man who is also fighting osterosarcoma named Eric . Steven hasn't met anyone currently in treatment for his same kind of cancer, so it was really nice to talk to him and find out his take on chemotherapy. He had his leg amputated and already has his prosthesis. Steven was really interested in that. In fact, after Eric explained that he doesn't need physical therapy and he has had a prosthet...

It is 10:45 Thursday night and we are in the hospital. Steven finished his four hour infusion of high dose methotrexate around 8:30. So far he hasn't thrown up, but is feeling nauseated. He is asleep now, so I think we have been through the worst for this round. We should go home Sunday if all goes well. We had a fun day yesterday--it was my birthday and we took the kids to the children's museum. They loved it! Rob took the day off and it was nice to have him home for something not medically related. I wont deny that I feel like I've aged 10 years since my last birthday. I've have also learned a lot about what is really important. I am so grateful to have all my kids around me--even though at least two and sometimes three still fight over who gets to sit on my lap. I blew out all 34 candles no problem--I bet you can guess what I wished for this year!

Have you heard of Alex's Lemonade Stand? It's a childhood cancer fundraising organization that started with a little girl named Alex who wanted to do something to raise money for cancer research. Some of my dear friends from high school have put a lot of thought and effort into an Alex's Lemonade Stand in Steven's honor. It will take place at the Midvale Harvest Days in Midvale City Park this Friday evening and Saturday. Here is the link to the webpage set up for the event. You can donate there, or text "LEMONADE E75051" to 85944 for a $10 donation. We had a great time tonight painting posters and setting up the stand for a trial run. My kids are so excited to march in the parade on Saturday--they get to throw lemonade taffy and decorate a wagon. If you want to come along, let me know--the more the merrier. Steven is pretty bummed that he is going to be in the hosptial that day--too bad! I really can't believe the amount of work my friends have...