Tired

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 that--I'm getting tired, too. I do feel like there is going to be an end to this--only four more rounds to go! At the same time, I feel like I can maybe handle one more round and then I will break, and maybe my whole family will crack apart. Laura, the three year old, clings to me longer and tighter every time I come back from the hospital. Things are just on edge around here.

We do have some good things to look forward to this week. On Thursday, Steven will get to take his leg home. He didn't realize it was this Thursday until this evening and he has been smiling ever since Rob told him. On Friday, we should be going in for another round of chemo, but we asked for the weekend off so that we can go on a mini vacation with my family. Also, on Labor day, we have our family film festival to look forward to. It will be fun. I am happy to take an 8 day break from the hospital. Hopefully the time will also help Steven to recover even better.

And like each day, we will take these rounds one at a time. It may feel hard right now at the end of a long night and day, but I know we can do it. We've done 14 rounds so far--we are pros at this! And like every round before, we still have the amazing love and help from our family and friends along with God's unfailing support.

Round 14

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 dose steroid and he hated the way it made him feel. This one hasn't made him uncontrollably hungry, and has also helped with his runny nose problem. We aren't too sure about that--the docs say that some kids can have this when they get chemo. We aren't sure if it has to do with allergies or the mucus membranes. Who knows, but we use a lot of tissue at our house and we should use more!

Back to school/ The prosthetic: Part III

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 shouting, "Steven! Steven!" I loved it, I'm sure he did too. One really nice thing about the program that Steven is in is that he will have pretty much the same kids in his class every year until middle school, so he didn't have to explain his sitution anew. Plus, the kids have been so nice and supportive to him.

On Tuesday, he went to school for an hour, and then I picked him up and we spent some time at Shriners. He got to try on his new leg and walk around with it (with crutches). It isn't finished yet, but I will post pictures anyway, so you can see the process.



We spent an hour and a half with the prosthetist, trying on the leg and making cuts and adjustments until he could put it on. After that, he walked around a bit and took it off to look for other potential problems that would be evident on his skin. He wasn't putting much weight on it, but he was walking around. He wanted to take it home so badly!



We took a lunch break at my brother's house, and went back for some physical therapy. We really liked the atmosphere there and the therapist assigned to Steven was really good. She gave us more exercises to work on and let him do some walking on the treadmill with his leg. He really loved it and kept wishing he could take the leg home. He should be able to have it after his next fitting, which will be September 1st.



So that is the news from here. He is back at school today. I was so worried about his ANC Monday and sending him to school, but when his labs from Monday afternoon came in, his ANC was 2600, plenty high for school. I'm so glad I sent him! It is hard to totally tell what his blood numbers are doing, but it looks like they are on the rise and he will be just fine for chemo, which should start either Friday or Monday.

Five rounds left! I can count them on one hand--if all goes well we could be done by the beginning of October. Seeing Steven with his leg, and talking with the prosthetist about breaking it in really kind of woke me up to how much work and uncertainty we still have ahead of us, but we will just do what we keep doing and take things one step at a time. (Pardon the pun :))

Farewell summer

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--those are my guide to what his immune system is doing. I am excited for both of the boys, but truly, I will miss them. I will miss the lazy days we've had this summer and the fun days as well. Here's to sunshine and lemonade and water fights and stargazing and lakes and ice cream and road trips and fireworks and all the other lovely summer memories we've made.

Prosthetic--part 2

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, he was nauseated for a week afterward and very much nauseated during. I took him shopping yesterday to get fit for a nice pair of shoes. (This is an important part of getting the prosthetic right.) He was dreading it--he hates shopping more than just about anything. The salesman looked at his foot, took a measurment and then came back with two pairs of shoes. He liked the first pair and didn't want to even try on the second. I am pretty sure he just wanted out of there. He ended up with the first one and left the store elated that he didn't have to do any more shoe shopping! I also took him to a fabric store to pick out what fabric he will have laminated to the new leg. He picked a galaxy design. The technician at Shriners dedided we should call it the "Van Ness Nebula."

So life goes on. School starts next week. I feel so much pressure to either squeeze some serious fun into the week or to just completely take it easy. But either plan will be a challenge as our days are scattered with appointments and tasks that move us ahead along our path. Why can't every evening be like tonight--the kids playing happily in the twilight, all of us sharing some homemeade ice cream. (Oh, yeah--except for the part where they fight over who gets to lick the beater. Well. . . okay. . . I'll even take that part.) Love it!

More chemo

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 birthday with you." He said, "Yeah, if Steven didn't have cancer, we could be together today." Of course, this is so blaringly obvious, but it still caught me off guard because he hasn't ever really complained about the cancer stuff. He's a quiet kid and I take it for granted that he is dealing with hard stuff because he bears it so well. All day as I thought about sweet Andrew, I got choked up. He has been a champ--very kind to Steven, bending over backward to help Steven with whatever he asks for. He often even offers to help Steven with little things he notices. For instance, the other day, Steven was carrying a book while crutching to the car and Andrew offered to carry it for him.

On another note, I just wanted to report that Steven's recent CT scan came back clean. Also, Doxyrubicin can affect the patient's heart and his echocardiogram today showed that Steven's heart function continues to look normal. Good news that will help me sleep a little easier tonight. That and an excellent night nurse who is superhumanly quiet. This is shaping up to be a good night.

Getting started with a prosthetic

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 of Steven's other foot in order to make the foot of the prosthetic leg.

I really liked Scott, the prosthetist assigned to Steven. He seems very experienced with rotationplasty and with prosthetics in general. He is a cancer survivor himself and is an amputee. In the lobby, I met a little eight-year-old girl that had a rotationplasty when she was three because she had a limb deficiency. She was really cute.

I will have to post more later about Shriners, but it is really a neat place. I am feeling good about our decision to get Steven's leg made there.

PT: the true test

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 and this one did too, before the surgery. It has certainly gotten better since the cast first came off, but it still has a long way to go.

Another main goal is to get his foot accustomed to touch. The nerves in his foot just kind of "go crazy" (as he says) when someone or something touches the foot. He describes it like a really intense tickle. Sometimes when we massage his foot he cries and other times he laughs, but not in because he likes it. The more he touches his foot, the more the nerves should come to understand that it they are not in danger, or whatever it is the nerves are thinking. He is also taking neurontin to try to help with the neuropathy.

The third goal that we are working on is putting weight on the foot. Today at PT he got up to 28 lbs of pressure. Last week he was only up to 10 lbs. His current weight is around 60 lbs, so that is almost half--meaning he could pretty much stand. To walk, your leg needs to support all of your weight, so he has some work. He will most likely walk with crutches for months after he has his prosthetic leg.

There are other things that need to happen before he can walk well. He has to be able to move all the right muscles to make the foot move. He needs to strengthen his leg which hasn't born weight for three months now. He has lots of work left ahead of him.

I have said that physical therapy is the hardest, and believe me it is. It is really hard for me when I help him with his exercises. He seems to be getting more and more dramatic in the crys and painful looks. He resents me and all I am trying to do is my job in getting him well. Okay, I admit that I'm probably not handling it perfectly and he probably is clashing with my overbearance. Some days are better than others.

I take him to a place near my house and he likes the therapist there. He hates going, but I don't have to bribe him or force him to go. I have started just taking him there and picking him up. Not only is it easier than finding a sitter for three other kids, I think that it is better for Steven to not have me hovering. I may or may not be totally obsessed with the PT side of things and having me in the room must feel opressive to Steven.

I have talked to several rotationplasty moms and one that I talked to told me that her son kind of gave up physical therapy. He's doing okay, but it has been a few years and he isn't running yet. I think it is that story that scares me. More than him not having full function, I think I am afraid that he will give up. I'm not a giving up sort of person.

I'm getting ahead of myself now. He hasn't given up, he is still trying. I just hope he has the resolve to see it through. He will probably need a year of physical therapy, maybe even two to get the best use of his leg. I lose sleep at night wondering if he can see it through. And when I am stretching his leg and he has the look of a tortured prisoner, I wonder if I will have the resolve as well.

Like most of us, Steven prefers to do the things he is good at. Lucky for him, he is good at many things. He hasn't struggled much at school or with piano. Sports aren't his easiest, and so he does kind a of minimum required amount of those. But here comes physical therapy and finally the child has a real struggle. This will be his true test. Is he the kind of kid who will see it through--even though it is so hard? I hope so. Not only for my selfish reasons, but so that his life will be full of possiblities.

P.S. He has an appointment tomorrow morning with the prosthetist who will be making his leg at Shriner's hospital. If he is ready, they will cast a mold of his foot and begin making his leg. If he isn't, they will send us home for more therapy. I'll keep you posted!

What do you do in the summertime?

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 prosthetic since three weeks post-op, Steven wondered aloud if maybe he should have just done the straight amputation. (For Steven, this goes back to PT and how hard it is.)

Eric reminded me so much of my brother, Mark, who is 20 and on a mission. Leaving the hospital, I was overcome with emotion--missing my brother, hating cancer, exhaustion, uncertainty of the future and gratitude that Steven could meet another cancer hero to look up to. Maybe Eric and his determination to play basketball again will help inspire Steven as he goes through the therapy, which is turning out to be the hardest part of our cancer ordeal so far.

One year older and wiser too

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!

Alex's Lemonade Stand

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 put into this stand. I'll post some pictures after it's over--it is amazing! Putting this together has been a big deal, and I feel so loved that they would sacrifice their time and energy for the childhood cancer cause that our lives relvolves so tightly around. Thanks guys, and bring on the lemonade!