one...two...

abbie ties a shoe! she had a big week, with a trip to dentist [she had a tooth pulled, photo and story coming soon] and now she learned to tie a shoe. she is so determined, she just sat down and we practiced over and over. she loves accomplishing things, and is pretty proud of herself. check out the short video of her making the 'perfect knot!'

Abbie's third day of skiing

Sarah, along with other family members, departed for the Mary Jane slopes early today. I brought Abbie up after lunch to meet Sarah and crew for another day of skiing-and why not? Kids under 5 ski free, including rentals, yahoo!! Abbie learned some basics on Monday at ski school and really improved on Tuesday-her first full day of skiing with the help of Rod and Rachel. Today, Abbie mastered the mountain, skiing down an entire run without falling!! She was all smiles as she finished (in the photos below). She said she was singing while she skied which helped her stay relaxed and focused as she maneuvered the slopes. We are both thrilled that she attempted this endeavor with great effort and perseverance! However, she required more patience as she did not want to wait for her mother... snowboarders are always slower to get started! After Sarah and Abbie exited the ski lift, Sarah had to strap her boot into her snowboard, but Abbie didn't want to wait, saying,"lets go, I have got to go." At least she was having fun!

perfect timing... and colorado!

we've shared a bit about the success of the treatment at MD, so be sure to read the post below. sorry it took awhile, but james wanted to make sure i clearly explained everything. :) one amazing thing that God did for us while we were in houston was to allow me the chance to spend time with my friend Jena. her house has been for sale the entire time we stayed with her, because her husband has been working in denver.... sort of a long story...
the awesome God thing, was that the last week we were in houston the house sold!!!
they had been trying to sell for quite awhile, but God knew that it would be such a blessing for us to be able to stay with her, so not until this cycle was completed did He allow an offer to be made on the house. isn't that just perfect timing!! so, now after several months apart, she gets to move back to denver and be with her husband again. i love the perfect plan of our great God.

and speaking of colorado, we are enjoying a great time in colorado on our family spring break trip. abbie went to ski school yesterday and we took her up on the mountain with us all day today. she did amazing!! it was a beautiful, 41 degree sunny day and we all had a blast! my sister, rachel along with my dad, worked with abbie to perfect her 'pizza slice' snow plow and turns. my other sister leah and i snowboarded- her first time back on the board in 10 years! she did great, and everything came right back to her! my uncle jack (73 years young!) and james skiied with us too! james got some great video of abbie- here is one to show you her great skiing technique. we'll put more on as we get more video of our adventures!

what we've all been waiting for...

this week, on our trip to MD Anderson, james was scheduled to have 2 scans done, to see how the cancer has responded to the clinical trial. he opted out of doing the MRI, because laying on the hard table for 3 hours would just worsen the back pain he's been feeling for the last 2 weeks. he did do the PET scan, which would give the doctors plenty of information on how he is responding.

and the good news is...
THE CANCEROUS ACTIVITY IS RESPONDING TO THIS TREATMENT! AND FOR NOW, IT IS UNDER CONTROL.

we never expected that this treatment would completely get rid of the cancer, but to see that it has had a positive response in his body is wonderful.

in the report they gave to us, there are 4 or 5 different areas of disease that have seen an actual decrease in cancerous activity! they measure the level of cancerous activity with the term SUV- here is a little more info on that:
{Measuring the SUV (Standardized Uptake Value) is a semi-quantitative way to assess the activity in a given focus. It represents the amount of activity in the focus relative to the activity in the other (normal) areas of the body. Typically, the SUV value of metastatic lesion is above 2.5.}

in james' report, here are some of the results, which i think is helpful to see just the number decreases:
*the previously noted focal area of moderately increased activity in the left sacrum is shown again with decreased SUV from 6.4 to 5.7.
*the lesion in the right iliac tuberosity (hip bone) also shows decreased SUV from 5.7 to 4.4.
*there is no new focal area of abnormal increased activity in the bones.

this is fantastic news!
all of the travel and treatment and uncomfortable side effects have been worth it! this treatment is causing the cancerous activity to decrease, which is what we hoped for.

his disease will never be cured, so we are always just working on controlling it. and this is showing to do just that.

now, they would love for him to continue on the trial in houston, because he is a success story. that would make the dr. and research team very happy! but, we are going to try to see if his dr. at KU Med would be able to administer the treatment to him at home, so he wouldn't have to continue to travel each week. there is a lot to figure out, with insurance and his doctor's decision on whether or not he feels comfortable doing this. you see, the combination of drugs he is on is not fda approved. both drugs individually are, but the combination is something that they are testing. so we will have to see if his dr. would be comfortable doing both drugs together, to allow him to continue on the treatment at home. again, we will have to see if insurance would cover it, if it is no longer a MD Anderson supported trial. it will take awhile to get this figured out, but we think we know how to go about it.... think, being the key word. we all know insurance isn't the easiest thing to work with!

so, for now, we are rejoicing in the success that this shows.
we thank you for praying for us and for believing the best with us.
we continue to ask for your prayers as we go into this next step of deciding what to do.
of course, we will keep you updated with anything new we figure out.
thanks again, for being a HUGE part of this journey with us!!!

it's the final countdown...

this week's trip was a good one, with beautiful sunshine in houston! if only we could spend more of the time outside...

before we left for the trip this week, james was complaining about his back/tailbone hurting. he had played with asher outside, riding around on a little car with him, and just this little bit of activity sparks up the nerves in his lower back area. it was very noticeable on the plane ride, but luckily it was a light flight, so he had room to lean over and spread out a bit.

he was scheduled to have an MRI this week, and was really dreading it because the table is so hard to lay on. when i reminded him that we moved it to next week he breathed a huge sigh of relief! so this week we only had to do the treatment. it was hard for him to lay down on the bed, so he spent most of the time standing up... he actually fell asleep standing up! one minute i see him standing up 'reading' his narnia book- the next he is falling foward onto the bed! thankfully he was standing right by the bed, or he could have really hurt himself!

this week we ventured out into the university area of houston and had a great lunch and an even better dessert. there is an outdoor shopping place with all the 'normal' shops but across the street is a strip of unique shops. it is a photographers dream of a place to do photos. the purple tiled floors, orange chairs outside and great places to stop for eating a treat would make for a great session!

we first stopped in the candy shop, which smelled so good. we bought some things for the kids and then headed next door to the chocolate bar. yes, a whole shop of chocolate. there was ice cream, cakes, fudge, chocolate covered everything! neither of us are huge chocolate people, but it was a really cool place.

our final stop was the one we planned on- swirlls. it is a serve yourself frozen yogurt place, with a salad-bar-like spread of toppings to choose from. james LOVES yogurt and when you add pomegrante as a flavor and fresh fruit to put on top, he is in heaven. it was a nice treat to give ourselves and i think we will probably go back next week, for one last time!

our plan for next week is to leave at the crack of dawn monday morning. we'll get our rental car and go straight to the hospital for his 10:30 PET scan. this takes about 3 hours. after this he will do his MRI. on tuesday we will meet with the doctor and look at these two scans and see what the results of doing the treatment have been. then he'll do his final chemo infusion. both days will be long ones, but the fact that it is the last time, it will be fine.

of course our hopes is that the scans will show no new growth in the size of his (many) tumors, and even a shrinkage of some of them. that would be wonderful and make him feel like everything has been worth it. even if things are just stable, the same size as when he went in, that would be a good thing too. if either of these are the result we will pray about whether or not to continue on it back here at home. we could come up with our own plan, about how many times a week/month he wanted to do it, so he could tolerate the side effect of the rash a little easier. all of that will come in time, but we'll keep you posted!

thanks again, to everyone who helped us out this week. the food was great and the sparkling clean house is beautiful! i'm sorry to my friends who were kept away from helping, due to our two sick kiddos. both are doing better, but still on medicine. abbie hasn't gone to school and probably won't the rest of the week. we want everyone to be feeling in tip top shape for our family trip to colorado for spring break!

and just because people like to see funny photos of our kiddos, here is one of asher. for some reason he loves to put things around his neck and on his arms... so even though it is mostly my jewelry, we still think it is hilarious.

in the home stretch...

james is in the final weeks of treatment, and things are going alright. after having some weeks off he was feeling much better and the rash was calming down. now, with 2 weeks of treatment in him, it is all returning. it doesn't seem as bad yet, so we'll keep hope that the lower dose will keep it that way.

we don't have to meet with our dr. anymore, before the treatments, which makes for a really quick appointment! this week we were in at 9am and done at 12:45. it would have been earlier than that, but the lab for blood work had some problem. it was nice to be done early for once! we had lunch and then went to see avatar... he has been waiting so long to see it. we really enjoyed it!

next week he is going to travel by himself, and make it a quick 2 day trip. he'll be home late tuesday night, and i'll be able to be home with the kids for the whole week. abbie will love this, as she has been really desperate for time with me. it will be nice to give it to her all week!

after next week there is another treatment with an MRI. then the following week he has a PET scan and the final treatment. we'll see what they say after the scans, to see if there are any changes in the size of the tumors they are targeting.

thank you to everyone who has given their time and treasure to help us through these months. everything has gone really well, in all aspects, and we thank God for providing that for us.

have a great weekend!

DISNEY WORLD!!

the wait is over... the family slideshow from our disney trip is here! i'm sure you're not as excited about it as i am- just to have it done feels great. we had such an amazing time, and looking back at all the photos was a reminder of how incredibly blessed we are.

the group of prayer warriors who put this trip together for us are still a mystery to us. our dear friend, marjorie, shared the idea with them when they asked if there was anything big they could do for us. to have a gift like this given to us was incredible and we have so many great family memories from this experience. thank you, thank you to everyone who helped make this possible for us.

enjoy the show... it is a little long, so sit back and relax

www.sorellimages.com/disney09/

happy valentine's day!

we've had a good week!
james' rash has calmed down a lot! this is partially to having one week off, but then this last week they lowered the dose on both meds. this will still prove itself in the end, but we believe it will work and at the same time allow james to not be so incredibly uncomfortable.

i was able to reconnect with many of my favorite clients and their awesome kiddos! i packed 9 sessions into 3 days, and will work hard to stay caught up with everything!

my dad, uncle and niece all celebrated their birthdays this month, so it was nice to be able to get together to have dinner and have a little party for them. finding the balance of work and 'play' is a challenge, but i think we're doing okay.

enjoy the love of valentine's day and make it an important day for all those you love!

a quick trip to the ER

tonight, during our superbowl party, james and i made a quick trip to the emergency room. his rash has been hurting him more, especially on his legs. it looks quite a bit more infected in areas, and we wanted to make sure there was nothing serious going on. because the rash is uncomfortable, having it on his knees makes it difficult to walk, sit and get up from sitting... and he's been having some shooting pains in his knee when he does get up.
so, right before half time we went to the er.

we were having our annual community group superbowl party (our 3 year anniversary party too!) at micah and jeremy's house, so we were able to leave the kids with all our friends. because we see each other a lot, abbie and asher are very comfortable with them, and love any time together. that made it easy for everyone!

so, after a quick x-ray of his knees, and blood work done, they didn't see anything unusual. they gave him a shot of a steriod that should help with the rash and swelling and switched him to a higher level of antiobotics. hopefully all of this will make a difference, and quickly, as it will be a pretty painful plane ride tomorrow with all that sitting. once again, we've been blessed with tickets for the flights, which is a huge blessing! i hope the snow doesn't deter us from leaving.

he'll start the second (and final) treatment on tuesday, after we see doctor wheeler.

they are going to lower his dosage, hoping to still get the positive effect they want with a little less of the negative side effects. we'll see... and we'll keep you posted...

whistle while you wait...

neither of us can whistle, but some days i sure wish i could. we waited to see dr. wheeler this week, and though it wasn't as long a wait as some weeks have been, it still was a little while. i try to 'jinx' us, by waiting a bit to get the laptop out to work, knowing that as soon as i get everything plugged in and loaded they will call us back. it didn't work as quickly this time (so i did get a few more disney photos ready for the upcoming slideshow!) but it wasn't 4 hours of waiting. hallelujah!

we first met with a dr. that james had seen on his first visit. i guess he is the one with the really good information, because he explained a lot to us in very simple terms. as he looked over the rash he commented 'it must be working'. i asked him if they say that just to make the patient feel better, or if there is truth in the statement. he explained that there definitely is a connection between the treatment working and the evidence of the rash. the chemo treatments are targeting cells, and killing them. of course they are targeting tumor cells, but if the chemo is killing skin cells, causing the extreme rash, it is most likely killing the tumor cells as well... that should have an exclamation point... it is most likely killing tumor cells!!!!

so, though it is horrible to endure, the rash is a good thing. it is spreading all over his legs and arms and is bigger and more red in these new parts. the simplest of things, like his t-shirt rubbing his chest, or the edge of his socks rubbing his legs, are all becoming painful. we talked about wrapping some of the big parts up, with some ace bandages, and the word 'leprosy' came up...those people probably wrapped themselves up to make the itching less bothersome... we haven't tried it yet, but just might.

so after this dr. gave us the explanation they took more photos of the rash. it was suggested that he not get the treatment for one week, to let the severity of the rash die down a little. the other dr. and coordinator all agreed.

so james did not get his scheduled treatment this week.

he is very relieved in thinking how this week might be better, without new drugs making the rash increase. he will only have to endure what is there now, not adding anything new... we hope. it seems crazy, and a little waste of time and money, to go all the way there just to be told they would skip the treatment. but, we needed the dr. to see him to be able to allow him to take the break.

this means that his cycle #2 starts next week. four more weeks of treatment and then one more week for a series of pet scans and mri's. that puts us into the second week of march, one week before the family ski trip we are looking foward to. 5 more weeks... i am tired just thinking of it.

so, i will get back on the care calendar and add some new things for the weeks in march we'll be gone. it has been amazing to have so much help, even though the kids were sick and many of you didn't have to come over for your time. i so appreciate your willingness and flexibility.

we will continue to fly southwest, because the flight and the seats are very comfortable. we have only one more week lined up for tickets, but many people have chipped in to provide for us to be able to purchase more tickets. i can't say enough what a huge blessing our community of friends and family have been.

let's all continue to pray that the treatments will work, and that God would grant James endurance with the rash, hope for some daily relief, and peace that he is in the best Hands possible.

we love you guys!
enjoy a fun family photo from florida... thanks marjorie for capturing this one for us!