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Sunday, October 26, 2008 2:47 PM CDT
Per's next scans are this Wednesday. It's amazing that 3 months have passed so quickly.
Per looks great and we got a very nice update from his physical therapist last week about Per's progress.
Please keep praying for our sweet boy. I'll update after we get his results!
Kristen
Sunday, October 12, 2008 9:11 AM CDT
Greetings!
Per is mid-way through his third course of Accutane and doing really well. I don't even have to remind him to take his pills, and other than the dryness, we're not really seeing side effects. He's such a trooper!
Per's next scans are planned for October 29th, in the afternoon. This will be his first set of scans since stopping "real" chemotherapy, so it will be interesting to see what is going on.
We are so thankful for how well Per is doing, medically. Honestly, we are blessed to have him each day, and also to have him not feeling sick.
Thank you for your prayers, we'll be sure to update when we get the scan results!
Kristen
Sunday, September 21, 2008 4:58 PM CDT
Per has happily finished his second course of Accutane. He does get pretty peel-y, but thankfully this time his lips didn't crack! Thank you LORD for chocolate lip balm!
Per's next oncology visit is on October 2nd, and then we are expecting his next scans on October 29th.
Remember to head out to your local Chili's on September 29th to help raise money for pediatric cancer research!
Thank you for your prayers and support. We are grateful for God's blessings.
Kristen
Tuesday, September 2, 2008 1:12 PM CDT
The first day of school has finally arrived! The kids were very excited to go to school today. Yea!
I'm a little nervous about how things will go, socially, for Per. Please pray that the LORD would provide loving and supportive friends for Per and that his teachers would have compassion and wisdom.
We found some chocolate "flavored" lip balm (with M&M's on it) that Per loves, so that is very exciting. Tomorrow Per and I will cruise down to Milwaukee to get the next Accutane prescription. We pray that the next two-week course will proceed as easily as the first two weeks (with the benefit of heavy lip balm use).
Audrey is very excited to be in a class with all of her friends this year, and we pray that God will guide the school year ahead for her as well.
This past weekend another local girl with a brain tumor passed away. Please pray for her family, www.caringbridge.org/visit/mariahklein. It is a grim reminder of the battle these children are facing, and we are so thankful for how well Per is doing.
Also just a quick plug for Chili's restaurants this month. They are fund-raising for the St. Jude's hospitals, and pediatric cancer research. It's a cause very close to our hearts, of course, and even though we don't go to St. Jude's, Per benefits from the research they have done in the past. On September 29th all of their profits will go to St. Jude's, so EAT UP.
Thank you so much for your prayers and concern,
Kristen
Sunday, August 24, 2008 8:44 PM CDT
Per has successfully completed his two weeks of Accutane! Now two weeks off until we start again.
He did very well taking the capsules, and liked that fact that they are supposed to be taken with a high-fat meal, so I often encouraged him to down some peanut butter and chocolate chips at the same time!
About a week into the pills, his lips got extremely dry and cracked. This was made worse by his aversion to applying any of the ten lip balm type products we purchased. Also his face got kind of flaky, but those things didn't seem to bother Per, even though they made him look a bit scary!
He also complained a few times about his knee hurting, but it didn't seem to limit his ability to play and be a kid.
Thankfully the two weeks is over. I think we'll continue to reevaluate the side-effects as we go along.
School starts in just over a week and the kids are really excited!
Kristen
Monday, August 11, 2008 10:24 AM CDT
If you would like caringbridge to email you whenever I update the page, go to the other page www.caringbridge.org/visit/perthomsen and click on "subscribe to journal notification"
Yesterday we went to Milwaukee to sign Per's consent for taking Accutane. I didn't know it was going to be such a big deal, but because Accutane is associated with severe birth defects, it is tightly controlled. So, now we have to keep Per from becoming pregnant or donating blood while he's on Accutane. Thank goodness we will have no problem following that instruction!
He is taking a pretty large dose, 100 mg twice daily, for two weeks, and then two weeks off. The usual dosage for his weight would be 10-20 mg twice a day. We will have to travel to Milwaukee every month to review the medication use and get a new prescription.
We started the medication today and it's unclear whether there are side effects or not. Tonight Per has a bit of a temperature and appetite is crummy, but that wouldn't be a typical side effect.
If all is well, we will continue this for 6 months.
Please pray that Per would tolerate the Accutane.
Otherwise we are trying to enjoy these last few weeks before school begins just after Labor Day. The kids are excited to see their friends again every day!
Kristen
Sunday, July 27, 2008 6:27 PM CDT
We have just returned from a great week of vacation. We spent three (too short) days at Camp Forest Springs, where we have been visiting since both Thor and I were kids.
Then we drove up to Houghton, Michigan for a brief overnight, and then on to St. Ignace, Mich, across from Mackinac Island. We took the ferry and our bikes to the island for a wonderful bike ride and visit.
Then on to meet up with family including cousins, Aunts and Uncles near Silver Lake, Michigan. It was awesome, and the kids are sad to be home!
We had perfect weather throughout and just had a great time as a family (when not going stir crazy in the car).
Thor and I have decided to go ahead and try Per on Accutane, as suggested by the oncologist. It would be a daily medication, and we will only continue it if the side effects are minimal. As you are probably aware, Accutane is primarily used for severe acne. The most common side effect is dry skin, but it can cause mood swings as well.
The theory behind using drugs like Accutane (or Tamoxifen, Thalidomide, Celebrex, Tagamet and others) is that cancer cells often can't handle the effects of the drugs, but normal cells don't have any problem with them. Right now there isn't enough evidence to say whether a medication like Accutane will benefit Per, but it's unlikely to cause big problems (unlike continuing the chemo he's already been on).
We have no idea when this will be started, but hopefully in the next week or so.
Thank you as always for your priceless prayers on behalf of Per and our family.
Kristen
Wednesday, July 16, 2008 7:25 PM CDT
Dear Friends, Family, and Prayer Partners,
We are very thankful to report that Per had a great scan of his head today and no evidence of any tumor! Such a blessing and we, of course, are thrilled.
Thankfully, our oncologist had talked to the specialist from Duke. Their recommendation at this point is to stop Per's chemotherapy. We are considering a daily medication to prevent recurrence, but there isn't any good evidence if this will help in the long run.
Thank you so much for your prayers.
We are so blessed to have your support and prayers. Please continue to pray at this time as we decide about using a daily maintenance medication, and that Per continues to be cancer-free.
Kristen and Thor
Tuesday, July 8, 2008 9:47 PM CDT
Well, it's just one short week until Per has his next scans. I must say it's a little unnerving, because good scans this time could mean the end of treatment.
We still don't know if there will be a plan for maintenance chemo, but if there is, it will likely be something daily and something that would not make Per sick.
Please pray for us as we approach Per's scans. We know that only God is in control of Per's life, and acknowledge that it is a miracle to have him in our home so long since his diagnosis. Just watching him play with his cousins this past weekend and how much he enjoys life is such a blessing.
Thanks!
Kristen and Thor
Monday, June 30, 2008 2:36 PM CDT
Well, Per was a trooper finishing up his chemo, and we had another great trip for go-karting and ice cream (although we had to take our neighbor along since Audrey was gone to youth camp!).
Both kids are really enjoying the summer and hanging out with friends and family.
We're looking forward to Per's scan results on July 16th, and if all is well then a change in treatment plan!
Kristen
Tuesday, June 17, 2008 8:41 AM CDT
Hello!
Per and Audrey are doing well and very happy to be done with school. They are spending most of their weekdays with Grandma Julie and loving it! We have been biking a LOT (did 10 miles on Friday and 12 miles on Saturday), and eating plenty of icecream.
This Friday, the 20th, Per has his routine oncology visit. We aren't anticipating any scans. Per is feeling well, other than a recent flare in his chronic constipation.
If all goes well we'll have 5 days of chemo again, and then have scans next month, July 16th.
Thank you for your prayers. We cherish our out-of-school time in the summer and the opportunities to be together as a family!
Kristen
Wednesday, May 28, 2008 6:54 PM CDT
We had a good but long day in Milwaukee today. Per started testing at about 8:30, and spent about 45-50 minutes of each hour in testing. He had a great attitude about it all.
The doctor spent a lot of time with us at the end of the day, going over all of the testing, which was mostly IQ testing. Per doesn't seem to be having trouble related to his surgery last year, but rather his long-standing developmental issues. I think she had some good suggestions for how to help Per do the best he can, and to keep him from getting frustrated. Mostly she just confirmed some of the learning strengths and weaknesses we already have been noticing.
Hopefully the testing will be repeated in 2 years, for comparison.
Otherwise we are done with chemo and back to life as usual! Per has a field trip with his class tomorrow, and the end of the school year is rapidly approaching!
Kristen
Monday, May 26, 2008 8:04 AM CDT
Per is done with his 5 days of chemo! YEA!
He was a real trooper and took them all without any fights. Yea!
So, weather and health permitting we are off to go-karting and Coldstone today. And to say Per is excited is an understatement.
On Wednesday Per and Kristen will be heading to Milwaukee for the neuropsych testing. We'll let you know how it goes.
Wednesday, May 21, 2008 5:43 PM CDT
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WEDNESDAY, MAY 21, 2008 05:37 PM, CDT
Our trip to oncology was uneventful. We have our chemo, our plan for taking it, and lots of rewards set up for taking chemo without making a fuss!
The doctor told us today that he is planning to do two more cycles of the same chemo after this one. He said that the highest relapse time for GBM is in the first 18 months, which is what we'll reach in 2 more months. It will be great to reach that 18 month mark!
We're not sure what the plan is after that. It sounds like our Milwaukee oncologist will be consulting with our Duke oncologist. I think we are hoping that there is a plan for some low-toxicity daily medication after we reach 18 months. Sometimes medications like tamoxifen, accutane, celebrex and even thalidomide are used to help prevent relapse of this type of cancer.
Anyway, for now we're just getting ready for the next 5 days. Thank you for praying!
Kristen and Thor
Saturday, May 17, 2008 3:27 PM CDT
Hello again,
Hope you are enjoying some beautiful Spring weather, as we are. Per is digging in the culvert, transferring the dirt to a wheelbarrow, in and out of some plastic bags ... and who knows what else? It's fun to watch him being a boy.
This Wednesday Per has his oncology visit. No pictures, as long as all is well, but we should be starting chemo on Wednesday or Thursday night, for 5 days. We would really appreciate your prayers for his anxiety as we go into chemo again.
Then, on Wednesday the 28th, we have an appointment in Milwaukee for "Neuropsych Testing." This was arranged through oncology, and I think it's intended to better understand what Per's underlying learning issues are, what is influenced by his chemotherapy, radiation, and previous surgery. The testing is supposed to last 4-8 hours.
The last time we took Per to Milwaukee for psychological testing, he was 3 and cried most of the time. I doubt that will happen again, he's so much more mature and used to being with lots of strangers, but if you could pray that he would be cooperative with the testing and that much would be learned, that would be great!
Thanks!
Kristen and Thor
Friday, May 9, 2008 3:14 PM CDT
Quick update:
This morning we took Per to see a local orthopedic surgeon.
At Per's "well child" appointment with his doctor a few weeks ago, she was concerned that his legs may be significantly different lengths. This could be a real issue for Per because of the radiation he received on his right leg.
This morning Per had x-rays that showed that his legs are almost the same length, and the apparent discrepancy was probably more related to some muscle imbalance and the way he holds his body when he's laying down. Functionally there should be no problem, and a shoe lift on the weaker/shorter leg might actually make things worse.
So, that's great news. Nothing to do about it (he has no symptoms anyway) and shouldn't be a long term problem.
Thanks!
Kristen
Thursday, May 1, 2008 6:13 AM CDT
We finished Per's 5 days of chemo with a few delays. Per was very emotional taking his chemo, and it's not clear why. It doesn't make him feel sick, it doesn't taste bad (although he'll try to convince you those gelcaps do), and he doesn't have trouble swallowing it. In fact, if you could convince him it was something else, he probably would pop it right down!
But as it is, when you hand him the chemo to take, he starts crying. I think there is a lot of emotional weight and importance attached to taking those pills.
So I'm not looking for advice, but I would appreciate your prayers for this little seven year-old boy with so much responsibility on his shoulders.
Speaking of "little" boys, yesterday we took Per shoe shopping and bought him men's size EIGHT shoes. Crazy!
Otherwise, both kids are enjoying the spring weather, despite a freakish snowfall earlier this week.
Per's next oncology visit is May 21st. No pictures that day, just a doctor visit, if all is well.
Thank you for praying!
Kristen
Thursday, April 17, 2008 1:20 PM CDT
Per's scans are officially STABLE!
Hooray! Praise the LORD.
Kristen
Wednesday, April 16, 2008 6:55 PM CDT
Well, we don't have the "official" report yet, but looking at January's scans and today's scans on the computer they look very much the same.
Prayerfully, the doctor should call tomorrow with the same report and we should be starting our 5 days of chemo again.
Thank you for praying.
Kristen
Wednesday, April 16, 2008 6:51 PM CDT
Well, we don't have the "official" report yet, but looking at January's scans and today's scans on the computer they look very much the same.
Prayerfully, the doctor should call tomorrow with the same report and we should be starting our 5 days of chemo again.
Thank you for praying.
Kristen
Sunday, April 13, 2008 9:27 AM CDT
Greetings!
Just a quick note to say that Per has head and thigh scans this coming Wednesday, the 16th.
Per is feeling great and doing well. If his scans are good, we anticipate repeating the same 5 days of chemo as before.
We're so thankful for every day we have with both of our kids, and how well Per is doing with treatment. Please continue to pray for Per's protection and healing.
Kristen and Thor
Friday, April 4, 2008 2:58 PM CDT
We are finally home from a wonderful 5 days and nights at Camp Sunshine!
Camp Sunshine is a week-long program for children with life-threatening illnesses and their families. http://www.campsunshinewisconsin.org/
The days we attended were for children with cancer and brain tumors, and were located at the Three Bears Resort in Warrens, Wisconsin. They have a great waterpark and other facilities.
It was a great retreat and opportunity to meet other families with similar issues and concerns. The kids really got to relax and the adult volunteers did a great job of entertaining the kids and making them feel special.
I'll be posting some new pictures including one from Audrey's birthday party at the Neenah YMCA. We had 11 girls from her class at the party!
Per's scans will occur in a brief 12 days. Keep praying!
Kristen
Tuesday, March 25, 2008 5:47 PM CDT
We just returned from a great trip to visit friends in Alabama during the kids' Spring Break. It was great to get away from the Wisconsin chill! We are hopeful that Spring is actually on its way!
Per had a good visit at oncology, and we are anticipating his next set of scans (head and thigh) in Mid-April. He did another 5 days of chemo without any problems and that pattern will repeat monthly as long as he is doing well.
One of the families we have met through our journey recently started Hospice for their daughter. Please pray for them. Emily's story is very similar to Per's. www.caringbridge.org/tx/emilysfight
Per seems to be growing up so much recently, but I also think he is becoming aware of the learning differences he has with his friends. He gets a lot of extra help at school, which is great, but there is only so much that the teachers can accomplish due to his longstanding developmental issues. In light of that we have been working on his ability to deal with teasing and such, and pray that God provides good friends for Per.
Per has been very interested in the photo album I put together from last winter, documenting his hospitalization, surgery and radiation treatments. It is a good reminder to me that we are passing the "12-14 month average survival" time for GBM and that each day is a blessing and gift for us. Sometimes it becomes easy to feel sorry for ourselves and wonder why God has allowed Per's life (and ours by proxy) to be so challenging. It's good to remember that we need to be thankful.
Audrey turned 10 last week. It's hard to believe she is getting so OLD! She is a great sister and a real privilege to have around.
Thank you for your prayers,
Kristen
Monday, March 10, 2008 4:09 PM CDT
Hello again, I'm actually glad we are so boring right now.
Per is doing well. We are gearing up for our visit to oncology this Friday and Spring Break! I'm so thankful that Per tolerates his chemo so well and that we don't have to worry about it ruining his break.
Overall we haven't noticed any changes in Per. He may be having a little weakness in one leg, but there isn't anything consistent, and it isn't getting worse over the last few months.
It seems strange that we have another month until Per's next scans, but not needing scans is a good thing.
Thank you for your prayers. We still need a miracle to keep this brain cancer from coming back and to prevent any new cancers, so KEEP PRAYING!
Kristen
Monday, February 25, 2008 8:35 PM CST
5 nights of chemo? Check!
Very glad to have that finished. The next time will be during Spring Break in a month!
Kristen
Wednesday, February 20, 2008 6:23 PM CST
Per and Thor had an uneventful drive to Milwaukee and doctor visit! So, I guess we'll start chemo tomorrow night for 5 nights.
We are almost one year from the end of radiation. I can't believe so much time has passed, and we're so thankful for how well Per is doing.
Kristen
Friday, February 15, 2008 1:34 PM CST
Life as usual for us. We have had a ton of snow, which is quite beautiful but can be a hassle!
Per is feeling well. Our next oncology visit is on February 20th, and there aren't any pictures/scans that day. We expect another 5-day course of chemo after that visit. Per's next scans should be in April, if all is well.
Kristen
Friday, February 1, 2008 7:20 PM CST
Per did a great job of taking his chemo.
I think we may have convinced him that it's no harder to swallow his chemo capsules than any of the other meds he takes!
So now it's pretty much life as usual until we return to oncology on February 20th.
Thank you for praying!
Kristen
Wednesday, January 23, 2008 8:03 PM CST
We are very happy to report that Per's MRI was STABLE today. That means that there were no changes, and we're thrilled with that.
Tomorrow night we'll start chemo again. For now the plan is to repeat the same chemo monthly for at least 6 months, and possibly 12 months, as long as there are no changes.
If Per is feeling well, there won't be any scans until the end of April.
Per did such a great job of climbing right up into the MRI machine today. He really was very relaxed and friendly to everyone. It was awesome.
Thank you for praying,
Kristen, for Thor, Audrey and Per
Saturday, January 19, 2008 9:36 AM CST
Just a quick reminder to all of you busy people that Per has his MRI this coming Wednesday, January 23rd. His last MRI was October 31st.
He has been doing well recently, so we hope that all is stable. Thank you for your prayers for Per and us all.
Thanks!
Kristen and Thor
Tuesday, January 15, 2008 3:31 PM CST
Thank you for all the birthday wishes. Per had a great birthday because we were in Sunny Arizona, with amazing weather and getting to see fun cousins and other family. This weekend he has a party with his friends from school
Next week brings around Per's next MRI of his head on the 23rd. The last scan was on Halloween, so we are eager to see how things are.
Please keep praying for Per and all of us.
Kristen
Monday, January 7, 2008 1:00 PM CST
I wasn't going to rush into Per's birthday celebration ... since his official party for friends isn't until the 19th, but...
I guess we are close enough to JANUARY 11th.
I remember how teary I was at Per's party last year. We took him to Chuck E Cheese and would've done anything he wanted. He loved the party and loved having his friends around and we just wanted to make the celebration as perfect as possible.
And here we are, a year later! So glad to see our boy turning SEVEN!
Scans are coming up on the 23rd. I'd be lying if I said we weren't getting really nervous!
Kristen
Saturday, December 29, 2007 8:52 AM CST
Here we are, one year from the day that Per was first diagnosed with this brain tumor. When we learned that it was GBM, we were warned of a 12-14 month average survival time, and worried that we'd never see the end of 2007 together.
I don't think I could have said it enough, that we are so thankful to God not only that we have Per, but also that he is doing so amazingly well.
For Christmas a family member made a donation to Make-A-Wish in Per and Audrey's name. I was trying to explain this to Per's 6 1/2 year old mind, and I said, "It's so other kids who are sick can go on a trip like we did (our Disney cruise), or have a special wish."
Per looked at me totally seriously and said, "Mommy, I not sick."
It's so amazing to me that this little boy who is fighting such a horrible battle doesn't believe he is sick (nor could I convince him!). We could not be more thankful for that.
Per finished his 5 days of chemo like a trooper, and is really enjoying his Christmas vacation. I've posted some new pictures of the kids sledding the other day, and remember that if you want to receive emails from caringbridge when I update the journal, you can set that up at www.caringbridge.org/visit/perthomsen
Happy New YEAR! We are so thankful for God's provision in 2007 and know he will continue to be with us in 2008.
Kristen
Saturday, December 22, 2007 6:59 AM CST
Four nights of chemo down. Per is doing great (other than being exhausted from too many late nights, sugary sweets and parties! Tonight will be our last night until after his scans on Jan 23rd!
Tuesday, December 18, 2007 8:39 PM CST
The first night of chemo is down. His dose went from 180 mg to 240 mg, so we'll see how it goes!
Kristen
Saturday, December 15, 2007 2:29 PM CST
Dear friends, family, and prayer partners,
MERRY CHRISTMAS! I know that you're all extremely busy right now, but I just wanted to give you an update on what is going on for Per and us right now.
The last time Per had scans and chemo was October 31st. At that time everything looked good, so when we went in for our visit about 10 days ago, our oncologist told us that we had reached the end of treatment. That was very exciting, but since this is a cancer that is extremely difficult to cure, we contacted the oncologist at Duke to see what his recommendation was. The Duke neuro-oncologist does want Per to continue on chemo, and that is how we have chosen to proceed.
Per will only be taking 1 of the 2 drugs he has taken before for chemo, and he will take it for 5 days out of the month. Of course we would rather he be off of chemo, but we also don't want to turn our back on this monster and wait for it to come back. We may continue this chemo regimen for a year.
Thankfully, Per has done very well with this treatment in the past year, and has been able to continue with school as well as staying well. We pray that this continues. We can't believe that it was a year ago December 29th that we were rushing to the ER with Per not able to use his left hand and receiving this frightening news.
Prayer requests:
1) for the chemo to continue to be effective
2) for Per's upcoming scans on January 23rd
3) for a miracle to prevent this cancer from returning
Praises:
1) Christmas is coming!
2) The gift of Jesus Christ and forgiveness
3) That Per has been so strong and healthy despite all his challenges.
Thank you!
Thor and Kristen
Wednesday, December 12, 2007 6:25 AM CST
Merry Christmas!
Thank you to all who have been holding Per and all of us up in prayer this year. We are eternally grateful.
We are so thankful for a year that has been much better than we imagined it would be!
Kristen
Wednesday, December 5, 2007 8:34 PM CST
We are home from Milwaukee. Our visit was pretty uneventful, which is good!
Per has completed all of the planned chemotherapy (6 sessions), so now we wait.
In 6 weeks, Per will have another brain MRI, and as long as nothing changes, there won't be any treatment. If there is any sign of relapse, a new treatment plan will be developed.
Of course we are thankful to not be starting chemo tonight and to have at least the next 6 weeks off of blood draws and chemo recovery.
Please continue to pray for Per that this brain cancer would not return and that no new cancers would develop. He still needs God to work a miracle in his life every single day.
Thanks!
Kristen
Monday, December 3, 2007 5:28 AM CST
We're still here, and enjoying the big snowfall we received Saturday afternoon! I need to take some pictures of that!
This Wednesday we will be taking Per down to Milwaukee for another oncology visit. No scans this time. We think there is a possibility that Per may not have chemo scheduled again, or that this may be his last round on the protocol, so there should be an interesting update on that subject Wednesday night!
Another set of scans should follow in January.
Per is feeling great, loving school and life and it's really impossible to tell what a huge battle is going on inside of his body.
That's all for now!
Kristen
Saturday, November 24, 2007 6:15 PM CST
Finally home from a busy few days!
First we went to Grandma Alice's house for Thanksgiving. Uncle Brent, Aunt Christina, and James were there! We had a fun Turkey Trot (1.1 miles for the walkers, 2.2 for the runners) the day after Thanksgiving (BRRRRRrrr!).
Then we headed north to Grandma Julie's house. This afternoon we went and got our Christmas tree with Grandma and Grandpa. Yea for Christmas!
It's pretty cold here, right around freezing. We'd love to see some snow!
Kristen
Wednesday, November 21, 2007 1:50 PM CST
Happy Thanksgiving!
We are so thankful this year that God has taken wonderful care of Per. Just under a year ago we were confronted with the possibility that Per wouldn't live out a few more months, let alone a whole year! And prior to surgery we were warned that he would never fully use his left hand again.
Well, please do NOT tell Per that he is sick, because he doesn't think so! He feels so good and for that we are thankful.
We hope that you are feeling blessed this year as well, even despite life's difficult times.
Kristen
Thursday, November 15, 2007 8:26 AM CST
Per is doing pretty well. I think he'll be even better today since DADDY is home! He is having fun at swim lessons, loves going to school, and is looking forward to the first snowfall.
Per isn't wearing his glasses much, but at least he hasn't lost them yet. We'll see!
Just a week until Thanksgiving!
Kristen
Saturday, November 10, 2007 8:25 AM CST
We had a bit of a surprise this week when we took Audrey in to get her glasses updated and found out Per needs them too! So, he looks very handsome in his new glasses. I will post a picture later today.
Audrey is very attached to her glasses, and puts them on as soon as she wakes up, and takes them off after she gets in bed, even though her eyesight isn't that bad. It will be interesting to see how Per feels about his in the days and weeks to come!
Monday, November 5, 2007 9:19 AM CST
Per finished his 5th night of chemo last night, so we are done for this cycle! He really is a trooper about taking his pills and doesn't have many side effects.
Back to school again today (can't miss those hot dogs for hot lunch!) and swim lessons.
Thank you for your prayers,
Kristen
Wednesday, October 31, 2007 8:37 PM CDT
Dear Friends, Family, and Prayer Partners,
Just a quick report to say that Per's scans today were STABLE. This means no changes, and is about as good as we could hope for.
There is still something on the brain MRI which could be scar tissue or non-changing tumor, but at this point it is not worth going back in to find out.
So, tonight we will start up Per's 5 days of chemo. We are so thankful that Per has been tolerating this treatment so well.
The kids still had enough energy to go trick-or-treating after we returned home. It was amazing! And Per again sailed through his 2 hours of MRI scanning without too much trouble.
Thank you for praying for us!
Thor and Kristen
Tuesday, October 30, 2007 8:01 PM CDT
Okay, we're getting ready for tomorrow!
Please keep praying and I'll update as soon as we know something.
There are some new pictures from our recent trip to Chicago with friends!
Kristen
Tuesday, October 23, 2007 5:19 PM CDT
Dear friends, family, and prayer partners:
Per's next set of scans are quickly approaching! We are anticipating and MRI of Per's thigh and brain next Wednesday, the 31st.
Other than a recent fever lasting 6 days, Per has been doing well. He is attending school almost full time and loving every minute of it! Audrey is also enjoying school, and we are so thankful for their teachers and friends.
Praises:
1) Per is able to attend school and has no physical symptoms of any previous treatment!
2) The prayers and friendship of people like you!
3) We are almost 10 months out from Per's brain tumor diagnosis and his health is better than we could have imagined or hoped for
Prayer Requests:
1) For Per to be relaxed for his MRIs
2) that the scans would show NO return of his brain tumor or anything abnormal in his thigh
3) that he would tolerate the chemotherapy which will hopefully start the day after his scans.
Thank you for praying!
Thor and Kristen
Wednesday, October 17, 2007 10:13 PM CDT
Per was thrilled to be back at school today, and can it be, NO FEVER today????? Hooray! Thank you LORD!
The oncologist had suggested we try some steroids, be hopefully we can avoid them.
Per is feeling great. Scans are in just 2 weeks!
Kristen
Tuesday, October 16, 2007 7:58 PM CDT
Okay, so Per continues to have temps up to about 101. His behavior is mostly normal, occasionally he coughs or complains of some other vague thing, but nothing persistent.
He had a ton of bloodwork today that was normal, so that's reassuring. Our oncologist has suggested that we start some steroids if the fever doesn't clear, which probably means they think it could be coming from his surgery/radiation site.
All in all, Per was very glad to get back to school today and is feeling well. Lots of kids in his class are sick, so it's still possibly from a virus or something.
I'll let you know if anything new turns up!
Kristen
Monday, October 15, 2007 63:48 PM CDT
Nothing turned up at the doctor's visit. Per is feeling well and really hasn't had fever again today. We're hoping it's just a virus.
Monday, October 15, 2007 6:24 AM CDT
Per continued to have fever off and on through the weekend, but is otherwise feeling fine.
So, off to the doctor we go today!
Kristen
Friday, October 12, 2007 11:31 AM CDT
Per still has a bit of a fever, but nothing else, really. Unfortunately, this means he missed his class field trip today to the pumpkin farm! Poor Per.
So, I think we're on the upswing. Mostly Per is excited about Daddy coming home tonight! YEA!
Wednesday, October 10, 2007 3:54 PM CDT
Hi! Yes, we're still alive!
The weather here has gone from cool to hot and back again! It's crazy!
Per is doing well. He finally recovered from the cough that was plaguing him for a couple of weeks. He also complained of a headache for a couple of days when it was hot, but that seems to have passed as well.
Right now we're just living life and waiting for Per's scans on the 31st!
Thank you all for praying for us!
Kristen
p.s. Spoke too soon. Per has a fever. I'm so glad he doesn't have a port anymore, because that always had us off to the ER for fevers.
Saturday, September 29, 2007 4:39 PM CDT
Wow, September is almost at an end.
Per is really enjoying school, even though he doesn't enjoy the little bit of homework he has! He loves his friends and doesn't mind being pulled out of class for the extra speech, math, and reading help he gets.
Also, for the last few weeks, Per and Audrey have both been to swim lessons. This is the first time Per has been to lessons since January!
Things are pretty low-key for us this weekend. It's hard not to plan a lot of things, but I think we finally managed it.
Hope you are enjoying the start of fall, and October!
Kristen
Saturday, September 22, 2007 9:10 AM CDT
HEY! Join us as we eat at Chili's on Monday, September 24th. All their profits that day go to support St. Jude Children's Research hospitals and the fight for children's lives!
Thanks!
Kristen
Thursday, September 20, 2007 11:03 AM CDT
Wow, I must say that Per did a great job taking his pills. There were 10 teensy capsules and 1 large one. And even though he cried the whole time (mostly tired and grumpy), he swallowed them down, as many as 3 at a time!
No nausea since then, but I sent a little extra nausea medicine to school with him. Another bonus: we moved to orally dissolving nausea meds, so NO LIQUID! Hooray!
Busy weekend for us all ...
Kristen
Wednesday, September 19, 2007 6:57 PM CDT
Hi! We're home from Milwaukee!
Just a quick drive down this afternoon, saw the Nurse Practitioner and got our prescriptions. Then we were able to pick them up tonight and we'll get started on our 5 days of treatment!
Per is feeling great and I am going to try to get him to swallow the eleven capsules tonight and avoid opening all of those teensy capsules and mixing the chemo into applesauce. I have high hopes that he can do it!
Our next visit will be October 31st and Per will have both a head and thigh scan at that appointment.
We have had beautiful weather this week and looking forward to a busy weekend!
Thank you for praying, we are so thankful that Per is doing well.
Kristen
Saturday, September 15, 2007 6:37 PM CDT
We had a great but exhausting time at Quarry Quest!
It was a bit breezy and quite cool, but that is much better than rainy or HOT!
Just a few days until chemo starts again, we have our oncology visit this coming Wednesday, the 19th, in Milwaukee.
Thank you for continuing to pray,
Kristen
Wednesday, September 12, 2007 7:26 AM CDT
Both kids are really enjoying being back to school, even if it's a big adjustment to do homework!
Today we'll be meeting with Per's teacher and principal to talk about how Per is doing and about his treatment plan. For the rest of you, basically it's chemo every 6 weeks for many, many months to come. We're still so thankful that Per is tolerating them chemo very well and participating in lots of normal 6 year-old things!
This weekend is QUARRY QUEST! We LOVE Quarry Quest! Want to check it out? www.quarryquest.com
Fall and cooler weather is definitely upon us right now, and that gives us a good excuse to break out those new school clothes as well!
Per's next visit to Milwaukee, and next chemo, is planned for next Wednesday, although we're not anticipating any scans.
Thank you for praying!
Kristen
Thursday, September 6, 2007 7:14 AM CDT
From Per:
I like going to school. I like going on the bus and coming home on the bus. My friend Justin is not in my class. Frank, Tyler and Paul are in my class.
At recess I like to play basketball and play tag with Frank.
My favorite thing to eat for lunch is peanut butter and jely from home.
I like my teacher. Her name is Miss Q. She is nice. She is old (at least 24!).
From Audrey:
The first day of school was AWESOME! We did some activities to get to know each other. I thought that it was very fun.
The best part of my day was doing math. I get to take math with the 5th graders. The worst part of my day is reading class, because we have to look things up in the dictionary.
My teacher's name is Miss Wager. She is very fun.
Tuesday, September 4, 2007 8:40 AM CDT
Well, they're off to school!
I can't wait to hear how the first day goes. They were both very excited last night and this morning. I could hardly get Audrey to bed, nor keep her out of long corduroy pants and new school sweaters for this 88 degree day!
Oh, and although it's farther to walk from the bus stop to home than it is from school to home ... Per wants to take the bus!
It's about 9 months since we received this horrible diagnosis for Per. I'm so thankful to be writing a "back to school" update for BOTH kids.
Kristen
Monday, August 27, 2007 9:25 AM CDT
Life has been pretty calm recently ... we have been getting lots of much-needed rain, and the grass is very happy.
Just 8 days until school starts. We went this past Wednesday to see Per's new classroom and teacher! Yea!
Per is feeling great and enjoying the new wheels we just got for his Gator-truck. He'll be ready to drive a semi by the time he's 12, at this rate!
Audrey is getting excited about school, too. She'll be in a combined class of 4th and 5th graders, and looking forward to it!
Kristen
Saturday, August 18, 2007 1:00 PM CDT
Good scans? Check!
Chemo? Check!
Okay ... on with life!
Last night Audrey competed in the Waupaca Area Kid's Triathlon, which included a 200m swim, 1 mile bike, and 0.3 mile run. She had a GREAT time! We are very proud of her for working so hard!
Would someone warn me next time that introducing Per to go-karting would result in daily requests to return to the racetrack! He can't wait to get back there.
This Wednesday brings a classroom visit for Per. We are very excited, although the actual school year doesn't begin until Sept 4th.
See you later!
Kristen
Wednesday, August 15, 2007 6:24 PM CDT
Dear Family, Friends, and Prayer Partners:
Per did a great job laying still for his MRI's today. Thankfully, he only needed one needlestick for all his blood tests and contrast injections.
We were very happy to hear that his head MRI shows a little less post-op fluid and the area of "enhancement" is the sameThis area could either be from residual tumor or from healing.
The MRI of Per's thigh was exactly the same, and the oncologist feels we don't need to be concerned about that area any longer.
Starting tomorrow, we will be repeating the same 5-day chemo regimen Per had 6 weeks ago. We are so thankful that Per has been tolerating this chemo well. Per will have another visit at Milwaukee in 6 weeks, but we don't anticipate another brain MRI for 3 months.
Thank you for praying for Per, his scans, and for all of us.
Praising God,
Kristen and Thor
Saturday, August 11, 2007 3:41 PM CDT
Well, I admit to feeling increasingly anxious about Wednesday's scans. There it is. I'm not a big ball of impenetrable courage.
Anyway, it just seems like we have had such a great summer that I hate to open ourselves to bad news this week. Per is feeling so good and really enjoying himself. I wish it could go on forever.
This morning I was thinking how thankful I am that Per has been feeling so great. There are so many kids with brain tumors that have ongoing symptoms of their tumor. Since Per recovered from surgery, he hasn't had any weakness or other problems. It's a real blessing.
Also this morning, we went to the go-kart track. The first race each kid rode with one of us, but the second race Thor and Per each took their own car. At first, I was worried about how Per was going to do, but when he finally appeared around the corner, he had this incredible look of excitement on his face and was having a GREAT time! It was awesome! He really loved it and did a very good job of driving (must be all that time in his Gator, Grandma Alice?).
It's kind of funny he did so well, because yesterday he backed his Gator into the ditch, rolled it, and has a big scrape on his face!
Don't forget, SCANS ARE THIS COMING WEDNESDAY MORNING, THE 15TH!
Thanks,
Kristen
Tuesday, August 7, 2007 8:20 PM CDT
Dear friends, family, and prayer partners:
We are really having a terrific summer. Thor has been able to be home a lot, which we all appreciate! We have been enjoying the sun, water, trips to Grandma Julie and Grandpa Paul's house, and even went to Noah's Ark Waterpark last week!
Per has been really feeling well and his blood counts have been great, which is a huge blessing to us.
On the 15th, Per will have a few more scans. He will have his first head MRI since April. We are praying that this scan will show that the questionable area on his last scan is GONE and that there is no tumor. He will also have a repeat MRI of his right thigh, where there were some changes back at the beginning of July. We are praying that the thigh would be unchanged or improved.
School will be starting for both kids on September 4th. I think they are both excited!
Thank you so much for all your prayers on our behalf.
Praises:
1) a great time of memory-making and fun this summer
2) great health for Per
3) knowing that we are in GOD's hands and that HIS plan for us is perfect
Prayer Requests:
1) that Per would be able to lay still for both MRI's, at least 90 minutes
2) that the head and thigh MRI would be normal or at least "stable"
3) for safe travel to Milwaukee and back
Thank you!
Kristen and Thor
www.caringbridge.com/wi/pthomsen0111 or www.caringbridge.com/visit/perthomsen
Isa 45:6-7
I am the LORD, and there is no other. I am the one who creates the light and makes the darkness. I am the one who sends good times and bad times. I, the LORD, am the one who does these things.
NLT
Saturday, August 4, 2007 9:04 AM CDT
The kids, Grandma Julie, and I had a GREAT time yesterday at Noah's Ark in the Wisconsin Dells (don't laugh, Christina)! www.noahsarkwaterpark.com
We arrived just after 9 o'clock and didn't pull out of the parking lot until 6 pm! The kids were amazing, and Per didn't even get really grumpy until we discovered his towel was missing. Other than that and a foot injury for me, it was a perfect day!
Scans are coming up soon, on August 15th!
Keep Praying!
Kristen
Wednesday, August 1, 2007 6:39 AM CDT
Hi there!
We are home, the laundry is done, and things are getting back to normal.
I'm so thankful that Per had so much energy and did so well on our vacation! We took a ton of pictures!
One of the highlights of our time in Michigan was tubing on Silver Lake. Thor grew up on the water, but our kids have never been tubing or anything like that before. Both of them just loved it! Per's favorite things to do on the water are 1) splash someone, 2) be splashed, 3) go fast. So, the more of those you can combine, the better!
We also took a dune buggy ride (relatively tame), so that incorporated "go fast."
At any rate, it's good to be home!
Scans are coming up August 15th. Keep praying!
Kristen
Friday, July 27, 2007 9:11 PM CDT
Yes, I just updated, but I'm trying to keep you all on your toes, or at least entertained!
Today we took the Lake Express CarFerry from Milwaukee to Muskegon, MI. It was fast (2.5 hours), very clean, fun and thank goodness the water was calm!
Thor and the kids had fun on the windy deck, so I posted those pictures.
I also wanted to explain about our "triathlon" at Camp Forest Springs. Like I mentioned before, Thor has been doing some triathlons for the past year, and as Audrey has been improving in her swimming, we thought it would be fun for her to try one! When she passed her swimming test at CFS, during youth camp, I thought it would be fun to drag our whole family (including Grandma and Grandpa and our friends the Stamans) into the project.
So, we swam around the "deep" swim area, then dashed to our bikes, rode about 1.5 miles, then ran/walked about 1/4 mile. So it wasn't overly challenging, but kind of gave us all a little idea about what Thor participates in!
And, in honor of our participants, Thor and I made shrinky-dink medals, twice-baked (fused) and VERY cool looking.
Anyway ... back to vacation! Soon we'll be heading home!
Kristen
Wednesday, July 25, 2007 3:29 PM CDT
Hi there,
Thank you all for the encouragement.
We are mid-way through our vacation and having a good time. Family Camp was great, as always, and we are looking forward to more fun and family time ahead!
Scans are looming in our horizon, though, on August 15th.
Keep praying!
Kristen
Thursday, July 19, 2007 9:18 PM CDT
I always wonder if anyone (besides my beloved Prayer Bears) is reading this ...
Per is doing great and feeling incredibly excited about going to Family Camp next week! He has been asking about it since Audrey came home from Youth Camp a month ago!
Next scans are August 15th.
Enjoy your summer!
Kristen
Saturday, July 14, 2007 8:27 PM CDT
Personal note and not an update on Per:
Recently, I have been listening to the Newsboys song, "Wherever we go," on my MP3 player while running. I think I realized tonight why that song resonates with me so much.
You can find the lyrics here: http://www.klove.com/lyrics/lyrics.asp?2516
But my favorite part is this:
Hands up
Holler back here
Let’s throw this party in gear
We brought the welcome mat
Wherever we go, that’s where the party’s at
Hands up
Holler back now
We don’t claim any know-how
We’re giving God all that
Wherever we go, that’s where the party’s at
Right now, wherever and whenever we are spending time with Per and Audrey, we are trying to enjoy every moment. We really try to make it a party, to celebrate Per's life and the gift of our family.
I'm also reminded of a story in Matthew 9:14-15. The disciples of John the Baptist came to Jesus and asked him, "Why aren't your disciples fasting (and mourning)." And Jesus replied, "Why should they mourn while I am with them? When I am taken away, then my disciples will fast." (paraphrase mine)
This is the time of our lives to celebrate, to savor the moments and soak up the joy. If GOD chooses to take Per (or Audrey) from us, then we'll have plenty of time to cry and weep. But that's not what GOD is calling us to right now.
What is God calling you to today? A deeper understanding of HIS grace? A stronger comittment? A celebration?
Eccl 3:1,4
There is a time for everything,
a season for every activity under heaven....
A time to cry and a time to laugh.
A time to grieve and a time to dance.
NLT
Thank you for praying for Per and for our family,
Kristen
If you want to read the wonderfully inspiring story of a family who truly understand's God's hand in their daughter's life: http://www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=nora
Monday, July 9, 2007 4:28 PM CDT
We enjoyed the super-hot weekend here in Wisconsin. It even hit 100 degrees yesterday! But we made up for it by eating extra ice cream.
The kids are doing great, lots of swimming and playing with friends. Per is excited about a birthday party he is attending tomorrow night!
Our next doctor's appointment is August 15, after Per's MRI of the head and thigh. We expect to do chemo the following 5 days.
Thanks,
Kristen
Tuesday, July 3, 2007 4:07 PM CDT
ALL THE SCANS ARE GOOD!
Praise the LORD! The bone scan didn't show any abnormality at all in the right hip/thigh.
Now they just want to repeat the MRI of his thigh in 6 weeks.
Thank you for your prayers!
Kristen
Tuesday, July 3, 2007 1:06 PM CDT
Scans are finished and Per et al are on their way home.
There is a chance we'll get results today, but more likely not until Thursday.
Kristen
Monday, July 2, 2007 4:22 PM CDT
We just found out, Per's scans are finally scheduled for tomorrow morning, contrast and injections start at 9:00, then the bone scan is at 11:30, and CT scan at 12:30.
Keep praying!
Kristen
Saturday, June 30, 2007 8:34 PM
Audrey came home from camp today! Hooray! She had a great time, but is exhausted!
Per is thrilled to have her home. On Friday morning he crawled in bed with Thor and I, moaning, "I want Audrey to come home!"
Right now, we know that Per's next head MRI will be on August 15th, but we don't know about the other scans yet. It is very frustrating to wait for them to get scheduled in Milwaukee, and we really would like them to get done next week, while Thor is home.
Please pray that the scans will get scheduled for next week without any further delay!
Thanks,
Kristen
Thursday, June 28, 2007 5:25 PM CDT
Dear friends, family, and prayer partners:
Thor and Per drove to Milwaukee on Monday and Per was a real trooper for his MRI.
Unfortunately, there is something not normal on Per's thigh bone/femur, and the doctors are undecided about what it is. Some of them feel it is just damage to the bones from Per's previous thigh radiation, or caused by him walking unevenly due to previous surgery and/or weakness. A few of the doctors are concerned that it might be a relapse of Per's rhabdo, and some feel that it might be another new cancer, maybe a bone cancer.
Anyway, it's all guessing at this point, and sometime soon they want Per to have a CT of his chest and abdomen to look for any other tumors, and also a bone scan.
We're not sure on the scheduling of those tests, check Per's website in a few days to see when they will happen. Per's next head MRI is probably going to happen on August 15th.
In happier news, Audrey is off to camp this week, and we're sure she is having a great time! Per has been having lots of fun with Dad, Mom, and Grandma Julie!
Praises:
1) Audrey was able to go to camp, a highlight of her summer
2) Per did very well with his MRI
3) God is in control of our lives
Prayer Requests:
1) that Per's scans would be scheduled quickly
2) that this abnormality in Per's leg would not be cancer
3) for continued great times together as a family this summer.
Keep praying for miracles!
Kristen and Thor
Tuesday, June 26, 2007 12:25 PM
Somehow my update from last evening has disappeared.
Per did fine with his MRI. There are some changes in his femur (leg bone), but these are likely related to missing a big muscle in his leg from surgery or due to radiation. We'll probably know more tomorrow.
Thor completed his race in 6 hours and 6 minutes! Way to go DAD! And he isn't even limping!
Kristen
Saturday, June 23, 2007 7:10 PM CDT
Need an update? Okay ...
Let's see, this week we had a visit from Grandma Alice, a fun overnight at Grandma Julie's house, a nice long bike ride, another race in Neenah, and fun times at Menominee Park in Oshkosh! Today we went to our friend Peyton's birthday party and saw some friends too! But the big excitement for us was Per losing his first tooth this morning! YEA!
Tomorrow morning, Thor is doing his first half-Ironman triathlon. That means a 1.2 MILE SWIM, 50 MILE BIKE, and then 13 MILE RUN .... about 6 hours of continuous work. GO DAD!
Unfortunately, we won't be there to cheer him on. Tomorrow afternoon, Audrey is leaving for a week at Camp Forest Springs, so we'll be getting ready for that. She is super excited!
Per is feeling great. We shaved down his hair again to even things out and keep him cool.
On Monday the 25th he'll be having an MRI of his right thigh, to check for a relapse of his rhabdo, but we don't expect to find anything there. Then he'll see the doctor and if all is well, he'll come home with prescriptions for another round of chemo. I expect the worst part of his week, however, will be missing his sister!
We had some shocking news this week. One of the girls who we know, who had rhabdo at the same time as Per, recently developed Glioblastoma Multiforme, the same tumor Per has now. She was 2 1/2 years from the end of her rhabdo treatment, and her family is as shocked as we were this past January. If you want to check out 4 year-old Emily's story and pray for her, her website is http://www.caringbridge.org/tx/emilysfight/
For any child to have these two cancers is extremely unusual, and we hope that our story will help Emily in some way.
Thank you for praying, keep it up! You are all such an encouragement to us!
Kristen
Saturday, June 16, 2007 4:08 PM CDT
HAPPY FATHER'S DAY!
The kids have been having a great time since school finished. They ran a short race in Green Bay, for the Bellin Run. Then they went with Grandma and Grandpa up north to visit (and pick up) cousins Brandy and Brandon. This past Wednesday we all went to the beach together, and today we went for a bike ride and to the Farmer's Market.
We have been having beautiful, if hot, weather, and the kids are exhausted by the time night rolls around.
Per's MRI of his thigh was supposed to be this week, but got rescheduled to Monday the 25th. That same day he'll see the brain tumor doctor, and I assume we'll start chemo that week again, for 5 nights. As long as he feels fine, I don't believe Per will have another brain MRI until August.
It's so amazing, how well Per has tolerated his chemo. What a blessing for us and for him.
Thank you for your prayers, we are treasuring our days together,
Kristen
Friday, June 8, 2007 11:24 AM CDT
School's out! School's out!
In just an hour, Per and I will be heading to Audrey's school for their final award ceremony and the END of SCHOOL! YEA! I just love summer!
The kids have been loving the weather, although we have had lots of rain recently, too. Last weekend, Thor participated in the Trinity Triathlon at Spencer Lake, in Waupaca. On Sunday night, Audrey and Per participated in a local race for kids. They were very excited about their ribbons!
Per is feeling well, but we're continuing to work on his constipation issues. His hair is growing back, except on the area where the radiation was most concentrated. It's still pretty sparse there.
Keep praying! Our next chemo should be the weekend before July 4th.
Kristen
Sunday, May 27, 2007 6:34 PM CDT
I posted a few new pictures. They are from our weekend trip to Chicago. We had a great time!
We took Amtrak from Milwaukee to Union Station, and on Saturday morning we went to "Breakfast with the Belugas" at the Shedd Aquarium. It was fun to see the whales "up close" and to learn more about them. We also saw the dolphin show, touched some starfish (sea stars, for the politically correct), and laughed at the sea otters.
Later in the afternoon we went to Navy Pier and rode the Ferris Wheel.
We're glad to be home, and a little worn out, but it was fun to spend the time together, making memories.
Per finished his chemo really well last Monday night. He was able to swallow the last few capsules with only a little help, and didn't feel ill at all.
Our more recent problem is a flare up in his chronic constipation, but, we're dealing with it.
Oh, the kids are out of school on June 7th (Per) and June 8th (Audrey). YEA!
Keep praying!
Kristen
Sunday, May 20, 2007 7:44 CDT
Per is still doing well at swallowing his chemo capsule. Praise God! Just tonight and tomorrow left!
Thor is fighting a stomach bug, and I'm dreading the thought of Per getting it and nausea interfering with the last day of chemo. The previous cycle of chemo was ended a day early because Per threw up the last dose.
While I want him to get all of his chemo, it reminds me a little of the story of Gideon in the Bible. Gideon was leading a huge, well equipped army to fight the enemies of Israel, and God told him to leave most of his army and equipment behind as he went to battle. If Gideon had to rely on God rather than his troops, the glory for the victory would go to God, not to Gideon or his men.
I think sometimes God works with us this way, too!
Kristen
Friday, May 18, 2007 7:55 PM CDT
Just a quick note to say that Per started chemo last night and is doing great.
Both kids survived getting their teeth cleaned today, and tonight Per actually swallowed his one capsule WHOLE! Yea Per!
Praise God,
Kristen
Wednesday, May 16, 2007 7:49 PM CDT
Hello Family, Friends and Prayer Partners:
We had an uneventful trip to Milwaukee today. Per and Thor went into the MRI room together (yea DAD!) and by all reports Per did very well.
A few hours later we were very happy to hear that Per's scans are "stable" and looking good,. We did guarantee that the scans would be sent to Duke this week to be read by the neuro-oncologist there.
Hopefully we will start our 5 days of chemo tomorrow night, if the medication arrives at our pharmacy!
Thank you so much for your prayers. Per will be having an MRI of his thigh in 5 weeks and another MRI of his head in 3 months.
Keep praying for a miracle!
Kristen and Thor
www.caringbridge.com/wi/pthomsen0111
Ps 9:9-10
The LORD is a refuge for the oppressed,
a stronghold in times of trouble.
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.
NIV
Sunday, May 13, 2007 6:33 PM CDT
HAPPY MOTHER'S DAY!
(posted a few pictures from our day...)
Scans are rapidly approaching, just a few more days. Are we excited? Nervous? Worried? Exhausted?
That's a good question, and I'm not sure of the answer. Most likely the scans will show one of two things: 1) No Evidence of Disease (NED) or at least an improvement from the last scan or 2) changes suggesting return of the tumor. If there is NED, then we'll just do the same chemo that Per had 6 weeks ago. If there is tumor return .... we'll cross that bridge when we get to it.
Right now, Per is feeling great, enjoying Thor's long return home (the most in a few months) and the weather. We bought a trail-a-bike, which is a little like a 3rd wheel that hangs off the back of an adult bike. Your child really should be able to ride their own bike if you use one of these, but .... they don't HAVE to .... the adult just ends up feeling like a human training wheel ... but Per LOVES it.
Audrey really loves being outside and is having lots of fun with her friends from school and the neighborhood. She just got a new prescription for her glasses, and is counting the days to the end of school (sorry Mrs. Omdal!)
Mostly we are enjoying lots of family time and looking forward to this summer.
PLEASE CONTINUE TO PRAY FOR PER'S CONTINUED HEALTH AND FOR GOOD SCANS THIS WEEK. PLEASE PRAY THAT HE TOLERATES HIS CHEMO.
I'll be sure to post as soon as we know scan results.
Kristen
Wednesday, May 9, 2007 6:53 AM CDT
Hello friends, family, and prayer partners:
I guess it has been a while since my last update. Per has been doing really well. We finally received word from his neuro-oncologist at Duke that the changes on Per's last scan look like post-radiation effects, so that is good.
In one week we will be on our way to Milwaukee for Per's next follow-up MRI. If all looks well, we will repeat the same chemo that Per had 6 weeks ago. That chemo lasts 5 days.
We are very thankful that Thor will be home to go to the MRI with us. That will be a huge comfort for Per.
About 10 days ago, we were blessed to have the elders of our church pray for Per. It was wonderful to have our faith strengthened by their prayers and to be reminded that God's love for Per is perfect and that God has a perfect provision for us all.
This past weekend, Thor and Per were able to spend a lot of time doing fun father-son things while Audrey and Kristen were attending a family wedding in Arizona. It's really a blessing to have some special times together in the busyness of life.
Emotionally, we are getting along. There are easy days and difficult days. It's so hard to believe that Per has this cancer, just waiting to come back, when he feels so well. But, we know that his days are in the LORD's hands and that only God knows what Per's life will be.
We continue to pray for a miracle, and we hope that you do too.
Kristen and Thor
Ps 33:18-22
But the eyes of the LORD are on those who fear him,
on those whose hope is in his unfailing love,
to deliver them from death
and keep them alive in famine.
We wait in hope for the LORD;
he is our help and our shield.
In him our hearts rejoice,
for we trust in his holy name.
May your unfailing love rest upon us, O LORD,
even as we put our hope in you.
NIV
Rom 5:2-5
And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings,
because we know that suffering produces perseverance; perseverance, character;
and character, hope. And hope does not disappoint us, because God has poured
out his love into our hearts by the Holy Spirit, whom he has given us.
NIV
Sunday, April 29, 2007 2:26 PM CDT
As a new week begins, I just wanted to reflect on some verses that come frequently to my mind.
Ps 139:1-10, 13-16
O LORD, you have searched me and you know me.
You know when I sit and when I rise; you perceive my thoughts from afar.
You discern my going out and my lying down; you are familiar with all my ways.
Before a word is on my tongue you know it completely, O LORD.
You hem me in--behind and before; you have laid your hand upon me.
Such knowledge is too wonderful for me, too lofty for me to attain.
Where can I go from your Spirit? Where can I flee from your presence?
If I go up to the heavens, you are there; if I make my bed in the depths, you are there.
If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me,your right hand will hold me fast.
For you created my inmost being; you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made; your works are wonderful,I know that full well.
My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
NIV
I just love these verses. They remind me that God knows every action and every moment of Per's life.
Before Per was born, God saw all of Per's genes coming into place, including the faulty ones that predispose him to cancer.
I can't begin to guess what was going through GOD's mind as he saw those genes, thought of that precious boy, and said, "Now, here's a good son for Thor and Kristen! Here's a good brother for Audrey! This boy is exactly what I have planned to help bring glory to My Name through them."
Per's cancer, Per's genetics, are no mistake. The LORD put Per together just the way he wanted him to be. And even if we can never fully grasp GOD's plan, it will still be true, and it will still be perfect for us.
Right now, Per is enjoying school, enjoying his friends, and enjoying life. His next scans will be May 16th. But no matter what happens, we are in the hands of the LORD.
Kristen
Monday, April 23, 2007 12:56 AM CDT
Well, it's a new week, and Per's next set of scans are a brief 23 days away.
Per did seem very tired over the weekend, and even delayed our departure to church because he went back to sleep. But, he was very happy to have DADDY home for the weekend! Yea!
We don't have much excitement planned for this week. Per will have his blood counts done again today, and we expect to see them continue to fall for a couple more weeks.
I was remembering last week just how blessed we were when Per was on chemo about 18 months ago. That whole time, Per never needed a transfusion of any sort, and he was only hospitalized once for fever and low counts. We knew it was a blessing at the time. Per really had a pretty "normal" life.
Things could be very different this time. God may not choose to spare Per from so many of the complications of chemo. Per may need transfusions, end up in the hospital, or just have a really lousy summer.
Please pray with us that this is not the case. We want all of Per's days to as strong and wonderful as they can be. We don't want him trapped in a hospital waiting for transfusions or for fevers to pass. We want him to enjoy being a little boy.
Thanks,
Kristen
Tuesday, April 17, 2007 8:53 PM CDT
Well, the week wasn't all smooth as silk ...
Per picked up a stomach bug and Friday night he vomitted up his chemo as quickly as it went down. Since that was his last night we just called it quits. Hopefully next cycle will be better.
Saturday night he was still a little queasy, but by Sunday he was back to his old self.
Overall, Per seems to be doing really well. Both kids were back to school on Monday morning, and it the return went pretty well.
Audrey is doing great and LOVES being able to chew gum, eat popcorn and not have to floss around braces!
Thor is really busy with work and traveling lots. I know it's hard for him to be away from us, so please pray for him, too.
For right now, we'll just continue having weekly blood tests and look forward to Per's next scans in Mid-May.
Thank you for your prayers. We can't get through this without God's strength.
Kristen
Thursday, April 12, 2007 8:17 PM CDT
Per started his new chemo Monday night, after some confusion at the pharmacy. The bad news is that this month he has to take 8 capsules a night (18 the first night) for 5 nights. The good news is that next month he'll get the same amount of medication in 2 capsules AND we were allowed to open the capsules and give them in applesauce!
We were very blessed that Per has tolerated his chemo very well. Tonight was the first night that he vomitted, and he hasn't been feeling sick or tired. Even though our spring break has been windy and snowy, he has been playing eagerly with our visiting friends!
So, there are a lot of blessings in the middle of the craziness.
Also, Per's MRI hasn't yet gone to his doctor at Duke for review, but all the pieces are in place for that to happen now.
Please keep praying for Per and for all of us.
Wednesday, April 4, 2007 5:37 PM CDT
Dear Friends, Family, and Prayer partners,
We are home from Milwaukee a bit earlier than expected, praise GOD!
Per did very well with his early morning wake up and drive to Milwaukee on an empty stomach. I was very blessed that Grandma Julie and Audrey came along to help and to distract Per. Despite high winds, we arrived safely and in plenty of time.
Per was fairly anxious when the time came to lay down on the MRI table, but held still for the entire scan and we were done in less than an hour.
The oncologist shared the scan results with us a few hours later.
There is a small area that appears abnormal, but it's unclear whether this is inflammation from the radiation or whether it is cancer.
The brain tumor "team" looked at the films and are recommending that we proceed with chemo next week (two oral pills), and then repeat the MRI in six weeks. If the abnormal area is smaller, then we will know that it was either inflammation or an area of tumor that responds to the chemo. If the abnormal area is larger, then they will probably recommend a change in therapy.
The films will be reviewed by the oncologist at Duke, but I think he will probably agree with the doctors in Milwaukee. The Duke oncologist had previously told us that finding inflammation 4 weeks after radiation is somewhat common.
We anticipate that the results of the genetic testing on Thor, Audrey, and myself will be complete in 2-3 weeks.
I just want to remind you that this is not a cancer that treatment claims to heal. We're going ahead with treatment, but a miracle is truly required for Per to survive. Please pray for a miracle!
Praises:
1) Per did great today with his scan
2) Grandma Julie and Audrey tagging along for encouragement
3) Spring is coming SOON to Wisconsin!
Prayer requests:
1) We start chemo again next week. Please pray that God would use the chemo against any remaining cancer cells, even ones that may not show up on the scans.
2) Please pray that Per would tolerate the chemo and stay healthy
3) Please pray that we would love Audrey and Per and cherish them as the gifts GOD has given us.
Thanks,
Kristen
Ps 130:5
I am counting on the LORD;
yes, I am counting on him.
I have put my hope in his word.
NLT
Wednesday, March 28, 2007 4:45 PM CDT
Dear Friends, Family, and Prayer Partners,
We are finally home from our trip to Arizona. We had a great time seeing family, playing with cousins, and relaxing in the sunshine. It was a wonderful break from our daily routine.
In just one short week Per has his first MRI since January. A few days later he will start his new chemo, which includes the drug he was on before and also a new drug. We have no idea how he will react to these medications, but he will be on them for 1 week and then have a 5 week break to recover. Thankfully, the first week of treatment will occur during Spring Break, so we won't have to worry about deciding whether he is well enough for school.
Please be in prayer for Per's upcoming MRI and for his healing. We anticipate that these MRI's will be done every 2-3 months.
Prayer requests:
1) For good results at Per's MRI next week
2) For protection of Per's healthy cells from the new chemotherapy
3) Per is also fighting a cold
Praises:
1) Spending time with family this past week
2) Having some great days with Per and Audrey
3) The prayer support of family and friends like you
Thanks
Kristen and Thor
Romans 8:35-39
Can anything ever separate us from Christ's love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or are hungry or cold or in danger or threatened with death? (Even the Scriptures say, "For your sake we are killed every day; we are being slaughtered like sheep." ) No, despite all these things, overwhelming victory is ours through Christ, who loved us.
And I am convinced that nothing can ever separate us from his love. Death can't, and life can't. The angels can't, and the demons can't. Our fears for today, our worries about tomorrow, and even the powers of hell can't keep God's love away. Whether we are high above the sky or in the deepest ocean, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.
NLT
Sunday, March 25, 2007 6:43 PM CDT
Oh my ... you guys must really be getting worried about us now! (At least I'm posting new pictures so you know we're alive!)
We are getting close to the end of our trip in Arizona.
After arriving late last Tuesday, we stayed with my sister Andrea for one night, and on Wednesday we went to meet JAMES! Yea! Babies are so sweet, and Per just adores babies.
Of course, we were also able to see my brother, Brent, and his wife Christina (the proud parents) before driving to Tucson to connect with my sister Carrie and her family.
We stayed in Tucson for two nights, and the kids had a great time playing with (and tormenting) their cousins. Then, on Friday morning we drove back up to Phoenix and had the lovely group pictures taken of all the kids.
Aren't they a photogenic bunch? (Of course, James was the most cooperative)
Then Friday night we were back staying and Andrea's. We will hate to go home and miss this beautiful weather, but I don't suppose we can stay away forever.
You can start praying now for Per's upcoming scans on April 4th.
Thank you !
Kristen
Thursday, March 15, 2007 9:15 PM CDT
So ... we finished radiation ... you PROBABLY would assume that we're getting a break?? Hahahaha.
No.
Friday afternoon Per developed an ear infection, so we were off to the doctor again.
Then, over the weekend Per seemed to have a stomach bug that ultimately kept him home from school on Tuesday, and just kind of glum between Saturday and Monday.
On Wednesday, Per was back to normal! Yea! It's so good to have our perky Per back!
This weekend we have Audrey's birthday party at the Y, a family party on Sunday, and then getting ready to leave for Arizona!
Yea!
We are getting even more excited about our trip, because this week we welcomed a new nephew to the family and we CAN'T WAIT to meet him! Hooray!
Kristen
Thursday, March 15, 2007 9:15 PM CDT
So ... we finished radiation ... you PROBABLY would assume that we're getting a break?? Hahahaha.
No.
Friday afternoon Per developed an ear infection, so we were off to the doctor again.
Then, over the weekend Per seemed to have a stomach bug that ultimately kept him home from school on Tuesday, and just kind of glum between Saturday and Monday.
On Wednesday, Per was back to normal! Yea! It's so good to have our perky Per back!
This weekend we have Audrey's birthday party at the Y, a family party on Sunday, and then getting ready to leave for Arizona!
Yea!
We are getting even more excited about our trip, because this week we welcomed a new nephew to the family and we CAN'T WAIT to meet him! Hooray!
Kristen
Friday, March 9, 2007 11:03 AM CST
Greetings friends, family, and prayer partners.
Today Per completed his last radiation treatment. Yea! Now we will get a four week break from treatment, and then on April 4th Per will have his first MRI since early January, and resume his new treatment protocol. We anticipate that, if all goes well, he will be on 1 week of chemo and then 5 weeks off, in a repeating pattern for several months, if not a whole year. Of course, all that is dependant on the cancer not returning. If it does, we will be changed to a different treatment plan.
Also late last week we learned that Per has a genetic mutation that predisposes him to cancer. This isn't a surprise, given that he has developed 2 kinds of cancer at the age of 6, but it is definitely a more concrete threat to our son. We don't know yet if Per inherited this from us or if it just developed on its own, but Audrey and we are being tested.
The genetic findings aren't going to change Per's current treatment, but they raise his risk of developing additional cancers FROM the drugs and radiation given to cure his other cancers. In other words, then things we are using to cure him now could cause other cancers to form.
Last night I was reminded again that the treatment he is currently on rarely brings cure. It's really intended more to prolong his life.
Per needs a miracle to be cured of his GBM. He needs a miracle to have no other cancers develop. He needs a lot of miracles.
That said, our GOD is in the business of miracles, and we know He has a perfect Plan for Per's life. We can't choose Per's path for him, but we know that GOD loves Per infinitely more than we do and that GOD's wisdom is perfect and complete.
Please continue to pray with us:
1) for a miracle in Per's body and Per's life
2) for us to have wisdom and peace about Per's treatment
3) for strength as a family
We are so thankful for:
1) the end of radiation
2) Audrey's upcoming birthday
3) an upcoming trip to Arizona to see family there and get away from work and school
4) Per's increasing understanding of God's love for him and his need for salvation
If you would like to send Audrey a birthday card, we know she would LOVE it. She will be 9 years old on the 19th of March and really has been a terrific sister to Per.
Please email me at kthoms0319@aol.com if you want our home address
or Audrey's email: athoms0417@aol.com
Keep praying!
Kristen and Thor
Sunday, March 4, 2007 2:51 PM CST
Hello there!
We are having a pretty relaxing weekend ...
Just ONE WEEK left of radiation and meds before our 4 week break. YEA! Per seems to be doing well. I just love thoses self-portraits in the slide show! He also took some pictures of his shoes .... no idea what that was about!
One special request:
Audrey's birthday is March 19th. If you feel led, would you send her a birthday card? She'll be 9 years old, and she is really doing her best to love her brother right now. Part of the time that means being patient beyond normal 9 year-old capability, and part of the time that means receiving less attention than she wants.
If you don't have our home address, please email me at kthoms0319@new.rr.com. Or you could send her an e-card at athoms0417@aol.com
Thanks!
Kristen
Thursday, March 1, 2007 12:40 AM CST
Soon we will be a week away from the end of radiation.
Per is doing really well with swallowing his meds, although he has been having some appetite issues and also complaining a little about his tummy hurting, so we're being a little more aggresive about the nausea meds. He continues to go to school every day, and loved playing in our new snow this week!
Audrey is keeping busy with school and loves the snow more than the rest of us.
Thor has been glad for an excuse to get the snowblower out, and ... I bought several more pair of gloves to help us finish out the winter!
Anyway, hoping to get through the weather and up to radiation tomorrow so we can finish on time next week.
Keep praying!
Kristen
Thursday, February 22, 2007 8:35 PM CST
Dear friends, family, and prayer partners,
Tomorrow marks the end of our fourth week of radiation! Only two to go.
Just over a week ago, Per started losing his hair, mostly on the right side of his head. It's very different than when he lost his hair from chemo, because that was all over, and right now there's almost a diagonal line going across his head between normal (but very short) hair and bald. Of course, being a normal 6 year-old boy, he doesn't mind.
Per has gotten much better at swallowing pills, both with practice and the help of a pet medicine dispenser that is like a syringe for pills. It's great, and the emotions around medicine-taking time have definitely eased.
Per also had blood tests this week that were fine, and he's playing like a normal kid.
Tomorrow Audrey is off of school, so she'll be able to tag along with us to radiation. She really has been good about encouraging her brother, even though things are hard on her right now as well. It is hard for her to partially understand what is going on, yet have no control over the situation. We are very thankful for supportive friends and family who have given her special attention.
After we finish the next two weeks of radiation and chemo, we'll have a four week break from treatment. During that time all of us are going to Phoenix to visit family. After the break, Per will start chemo with an increased dose of his current med (Temodar) and another oral chemo drug. He'll be taking both of those meds a week at a time and then have a 5 week break.
We really don't know how he will tolerate those meds, but it's too far out to worry about right now. Per has been doing so well tolerating his current treatment, and we hope that will continue.
Prayer requests:
1) That Per's current treatment would be effective
2) Complete healing of his cancer
3) Protection from the bad side effects of treatment
4) For Audrey's emotions and stress level
Praises:
1) Per is tolerating treatment and not having problems with radiation
2) We know that God is in control of everything that happens
3) The opportunity to rely on God and fight this cancer.
Thank you,
Kristen and Thor
Jeremiah 42:2-3
"Please hear our petition and pray to the LORD your God for this entire remnant. For as you now see, though we were once many, now only a few are left. Pray that the LORD your God will tell us where we should go and what we should do."
Tuesday, February 20, 2007 8:48 AM CST
Funny story (but also slightly gross):
So, last night Thor was giving Per a bath, and Per was crying and kind of grumpy... and of course I'm DREADING the fact that it will soon be time to give him his meds, given his mood ... and Thor asks me to get Per's meds so Thor can take them right away, because Per's going to bed soon.
But, by the time I got up to the bathroom, both boys had calmed down, and so we rapidly gave Per his seizure and nausea meds, and then I brought over the chemo, in the dispenser, behind a green tic-tac. No practice run.
The other problem is that many nights the chemo gets to the back of his tongue, but not really "down", so I am planning to push the dispenser a bit farther back tonight ... (yeah, great idea)
I rapidly push the pill/tic-tac in, and IMMEDIATELY Per coughs it out ... across the room! (okay, only a couple of feet, but nonetheless .... straight out of his mouth). And if you think I'm gonna let a bathroom floor get between me and $150 pill? LOL ... not gonna happen.
So, I quick pick it up and I think I just tossed it into his mouth, I don't think I wanted to chance putting the pill back into the dispenser. So at this point I'm feeling a little frantic, but trying to stay calm. He has only rarely been able to swallow a pill without a lot of assistance, but THANK GOD he took a few swigs of water ... kept drinking ... we're all watching him (including Audrey) in fear ... waiting for the face that means "I don't want to tell you I didn't swallow it," or "Yea! I swallowed it!"
finally, Thor asks *tentatively*, "Did you swallow it?"
"YES!"
*everyone lets their breath out at once*
Phew!
Thursday, February 15, 2007 8:20 PM CST
As of tomorrow morning we will be HALF-WAY through radiation. PRAISE GOD! So thankful. Per is still doing great there ... just climbs up on the table without hesitation and great spirits.
This afternoon when I picked Per up from school and pulled off his hat, I saw a 2-3 inch patch of bald scalp ... kind of sad to see his hair disappearing, but at the same time it is evidence that there really is radiation happening in that room. It'll be interesting to see how much more disappears. Tonight I shaved the rest of his head, so he doesn't look too weird, but he still has stubble on the rest of his head.
One other breakthrough tonight: Over a week ago, I bought a pill dispenser for dogs ... (looks like this: http://www.petco.com/shop/product.aspx?sku=617393&cm_ven=tag&cm_cat=54&cm_pla=617393&cm_ite=617393) Per was pretty resistant to using it, so we left it alone until yesterday. We practiced using it with tic-tacs, and although it wasn't foolproof it was an improvement over the usual battle. But, when I stopped with the tic-tacs and told Per we were going to do the chemo, he started his usual crying and begging to not take it.
So, tonight, we did one practice run with a tic-tac, and then the second time I slipped the chemo in behind the tic-tac and PRAISE GOD it went down with a little help. But, the best part was: NO BEGGING, NO CRYING, NO TEARS, and Per whisked himself off to bed without being upset like he does most nights. It was wonderful. I don't know if he thinks he escaped taking chemo, but ... I don't care! He's happy; I'm happy ... YEA!
Kristen
Happy Valentines Day!
Monday, February 12, 2007 5:30 AM CST
Happy Monday!
Both kids are fighting a cold right now, but otherwise doing well.
The less expensive nausea med seems to be working GREAT, so we're thankful for that.
Per is still struggling with swallowing the pills. It's actually more of a fear of doing it than anything else. You tell him it's time to take his medication and his mouth clamps shut ... It's not that hard to get it down if he just doesn't fight. However, since he'll be at Grandma and Grandpa's Friday night it would be nice if he would COOPERATE!
It's finally warming up (a bit) here and we're thankful for that!
Kristen
Friday, February 9, 2007 12:28 AM CST
Our second week of radiation is finished. Four weeks left!
Per has been doing well with swallowing his chemo. Thor had the brilliant idea to slip the capsule into some olive oil last night, so ... I pray that continues to work!
Tonight we're going to experiment with a different nausea medication that is less expensive. So that is another area of prayer concern.
Have a great weekend and stay warm!
Kristen
Tuesday, February 6, 2007 5:27 AM CST
After a restful weekend (including a brief trip to Chuck E Cheese!), we returned to treatment yesterday.
School was cancelled for weather, so Thor, his parents, Audrey AND Per made the trek to Green Bay. Then later Thor, Grandpa and Per went to Milwaukee. That makes at least 6 hours in the car for the boys! But all went well in the end.
Audrey was able to see the radiation suite, which Thor says scared her a little, but she kept a brave face.
Otherwise Per seems to be doing okay, and the kids enjoyed the relaxing weekend too.
Thank you for praying. Stay warm!
Kristen
Friday, February 2, 2007 9:18 PM CST
Dear Friends, Family, and Prayer partners,
Today we finished our first of six weeks of radiation! Per also got some practice swallowing pills this week and is starting to master that process.
Per seems to be feeling well physically. He has been to school each day after radiation, he hasn't been nauseated since the first night thanks to Zofran, and he is sleeping well.
Emotionally he seems to be struggling more, and it's not surprising that all of this is stressful for a 6 year-old boy who just wants to play and have fun! It's a blessing that Grandma and Grandpa have been able to take him to radiation for several of the sessions.
This coming week will include 5 more radiation sessions and the chemo will be continued nightly. On Monday, Per and Thor will go to Milwaukee to check up with our oncologist.
Praises:
1) Per has finished five radiation sessions and is tolerating chemo well
2) Per is improving at swallowing his pills
3) The support of Thor's parents taking Per to radiation
Prayer Requests:
1) For emotional rest for Per and the rest of us this weekend
2) Protection for Per's normal cells from the radiation and chemo
3) That God would work a miracle in Per's body
Thank you for continuing to pray,
Kristen and Thor
Thursday, February 1, 2007 6:55 AM CST
Thank you for your prayers. Per did much better at swallowing his chemo last night, even though it was hard to get him started and he seemed really stressed out.
Today will be our fourth day of radiation. I was able to take Per yesterday, and he's a real pro at it. He was very calm and did great, although you can tell he's nervous by his cold and clammy hands.
What a trooper!
Kristen
Tuesday, January 30, 2007 10:45 PM CST
Two days down!
We're having some issues getting Per to swallow his chemo. Can you please pray about that? It's frustrating for us all and worries us that not all of the medicine is making it into his system.
Thank you.
Tuesday, January 30, 2007 5:25 AM CST
Radiation went pretty well. It only takes a few minutes and I'm sure Per will be a pro in no time.
Last night we gave him nausea meds at the same time as his chemo, and he didn't wake up at all, so that's great.
Hopefully that will be the pattern for the next 6 weeks.
Monday, January 29, 2007 6:36 AM CST
Per did a great job of taking his chemo last night. He had some nausea in the middle of the night, but it wasn't too bad. Tonight I think we'll just give him his nausea meds in advance.
Saturday, January 27, 2007 6:16 PM CST
Hi! Our first radiation treatment will be Monday morning at 8:45. We're going to start the chemo Sunday night, rather than Saturday, because we are having family pictures taken on Sunday morning.
Please pray that Per would tolerate the chemotherapy well, that his bone marrow would be protected as much as possible, and that he would be able to avoid infections.
Thank you!
Kristen
Wednesday, January 24, 2007 12:09 PM CST
POSTED NEW PICTURES
One additional prayer request:
Per's chemo is going to be harder on his bone marrow than it was with rhabdo. On top of that his system is still recovering (18 months later) from the previous chemo. This means it will be more likely Per will need transfusions, platelets, and restricted activity because of low counts.
We want him to have as normal an existence as possible. Please pray that his bone marrow would be sustained as much as possible, while having a good response to the chemotherapy.
Tuesday, January 23, 2007 12:09 AM CST
Per, Thor and Grandma Julie went up to get started on radiation planning this morning. Per did a great job of getting his mask made. The mask is to insure that Per's positioning is the same every day, in lieu of the tatoos that people sometimes get for radiation.
Yesterday, Thor took Per to Milwaukee to pick up the chemo meds and have a follow-up with the neurosurgeon. So, we are the proud owners of expensive chemo pills, which we'll be starting next Saturday night. Per will take one each night for 42 days, and we're not sure how nauseated they will make him.
On Thursday, Thor will be taking Per back to Green Bay for one more planning session for radiation and then we'll start our 6 weeks of treatment next Monday.
It's still hard to believe that all this is happening. We had such a fun time sledding the other day and playing in the snow. Per really feels well, and it's hard to comprehend giving him toxic medications in the name of keeping the terrible cancer away.
And for those who have been praying, the insurance situation appears to be clearing up, Praise GOD.
Keep praying for God to work miracles in Per's life.
Friday, January 19, 2007 5:54 PM CST
Our visit with radiation oncology went well today.
On Monday, Per will be back in Milwaukee for a visit with our oncologist there and to see the surgeon for follow-up. Then on Tuesday, it's back to Green Bay to initiate radiation planning.
Friday, January 19, 2007 5:54 AM CST
Please pray that we get our health insurance situation figured out quickly while we are getting started Right now the insurance has no idea what it actually covers, and it's really frustrating. Thor spent several hours trying to get things straightened out yesterday.
Thursday, January 18, 2007 10:24 AM CST
Please tolerate me while I ramble a bit.
As you pray for Per, please remember to pray for all of us. The emotional ups and downs right now are pretty intense and exhausting. It's hard for us to support each other the way that we need to, and we really need endurance to make it through.
I think we are glad to hear that Duke agrees with our doctors as far as initial treatment, but disappointed to find out that they don't have a miracle cure there. That makes sense, because if they did have a cure we would be hearing about it everywhere.
It's also tough because some of the more promising treatments for adults right now aren't yet available to kids, due to safety concerns. So, there is still a lot of frustration.
We will be meeting with the radiation oncologist tomorrow afternoon in Green Bay.
We would like to get started on treatment as soon as possible, because every complaint of Per's makes us so nervous that the cancer is already coming back.
Kristen
Tuesday, January 16, 2007 6:25 PM CST
Hello friends,
We have finally returned to our hotel room after the day's activity.
This morning we met with "family services" for the Brain Center at Duke. Basically, they want to understand what support systems (that's you all) and stress management (your prayers) resources we have. It was refreshing to know that they want to help our family through all the aspects of Per's illness, not just dish out medications.
Later we met with Dr. G, the pediatric brain tumor specialist. His recommendation is that we start with the standard treatment, which is 6 weeks of radiation and chemotherapy, followed by monthly cycles of chemotherapy. Then if/when Per has a relapse we would be able to participate in other treatment protocols that are more experimental. There are 10 hospitals in the country which offer the other protocols, and the closest to us would be Children's Hospital in Chicago. http://www.pbtc.org/public/gen_info.htm
So, for now, we are hoping to receive radiation treatment in Green Bay, and be managed by our doctors in Milwaukee. If there is a return of the tumor then Dr. G. will tell us what to do next.
Per had a great day today, other than being tired of sitting in the doctor's office and missing his sister and classmates. We can't wait to get home tomorrow and start working on the next steps for Per's treatment.
Praises:
1) safe travel to North Carolina
2) meeting Dr. G. and getting ready to start FIGHTING this cancer
3) Being able to enjoy Per today
Prayer requests:
1) safe travel HOME
2) that treatment would start quickly and that Per would tolerate it as well as possible
3) that we could support Audrey emotionally
Thank you for continuing to pray for Per and the rest of us.
Kristen and Thor
Friday, January 12, 2007 7:08 PM CST
Dear friends, family, and prayer partners:
We had a good trip to Milwaukee today, despite some gray weather.
Thor's parents, Per, Thor and I met with the oncologist who handles all of the brain tumors at Children's in Milwaukee. He talked to us again about the poor survival rate for glioblastoma multiforme (GBM), and some of our treatment options. The treatment they are primarily offering us involves 6 weeks of radiation along with 6 weeks or oral meds, followed by monthly chemotherapy treatments. This treatment is not primarily oriented at finding a cure, it is just to prolong life, and not by much at that.
We're not ready to stop believing that God can work a miracle for Per, however. In light of that, we have an appointment at Duke University in North Carolina next Tuesday, with a pediatric brain cancer specialist, who has some long-term (over 3 years) survivors come through treatment. We are very excited about this meeting and the fact that they see many more patients with GBM every year than our physicians in Milwaukee.
We really want to fight this cancer as hard as we can, and keep following the path God puts in front of us.
In the meantime, Per went to school most of the week, feels great and is eating us out of house and home due to the steroids (thankfully we finished those today). He had a terrific birthday yesterday, thanks to cards and prayers from so many of you. Tomorrow is his birthday party, and he is VERY excited.
We believe that God is already working miracles for our family, including the support of so many people in our community, church, workplaces, and around the world. Thank you so much for your part in that.
Prayer requests:
1) Safe travel to North Carolina
2) For Audrey as she stays with Grandma and Grandpa
3) Wisdom for the doctors at Duke and for us as we make decisions for our son
Praises:
1) Courage and strength for our family
2) Having Per celebrate his 6th birthday
3) All of those who are praying for Per and for us, and helping us during this time.
Thank you,
Thor and Kristen
www.caringbridge.com/wi/pthomsen0111
p.s. If you want to read some uplifting stories of GBM patients, follow these links:
http://www.caringbridge.org/fl/david/
http://www.caringbridge.org/va/drewb/index.htm
Thursday, January 11, 2007 5:35 AM CST
Happy Birthday Per!
Our appointment with oncology is Friday at 1.
Tuesday, January 9, 2007 4:35 PM CST
Oncology wants to see us, they initially said Thursday at 1, but it's Per's birthday and he is "big badger of the day" at school (that's the U of Wisc mascot and their class mascot). So, Oncology will try to have us there on Friday.
Our visit with the neurosurgeon isn't until the 19th.
The oncologist is also going to contact some people outside of Children's to confirm the new diagnosis for us and get other opinions on treatment.
That's all we know for now.
Per went to school today again, and Thor and Grandma Julie are painting his room with trucks and airplanes and other ambitious things!
We are planning his birthday party for this Saturday morning at Chuck E Cheese!
Saturday, January 6, 2007 8:53 PM CST
Hello again ... I feel like I've just left things hanging for most of you.
Right now we don't have a treatment plan. We will be meeting with Per's doctors late next week to find out what the next steps are. We assume, from reading, that this will include radiation and chemo again. We also believe that our doctors will be consulting with other specialists around the country to determine the path.
Presumptively, this treatment will start in 2-3 weeks, after there is sufficient time for healing. Most likely there will be 6 continuous weeks of radiation.
At this time, we're just waiting to hear what the recommendations will be.
Per is feeling well and had lots of time with visiting friends today.
Friday, January 5, 2007 7:09 PM CST
Not much to say today. We arrived at home around 6 pm yesterday. Audrey came home from Grandma and Grandpa's house, and we just cuddled and spent time together.
This morning Per returned to school, by his request. He loves school and we so want him to be doing what he loves right now. Every day that he is strong enough to go we will facilitate him being there.
Also today we met with both kids' teachers and principals. We are so thankful for the wonderful teachers and other people involved in our kids' education.
Thursday, January 4, 2007 1:59 PM CST
I'm sorry, there is another update.
The oncologists just came to talk to us, because it turns out that the tumor in Per's head is not the same cancer as his previous cancer. It is glioblastoma multiforme, which they tell us has a very poor prognosis.
So, for now, we are getting ready to go home, and will learn what the other steps are in the near future.
Please continue to pray for us.
Thursday, January 4, 2007 12:42 PM CST
We have had a remarkable morning.
This morning around 7 a.m. Per and Kristen headed down to MRI. There was concern that Per wouldn't be able to be kept sedated for the entire 3 hour scan, and for the first time, Per agreed to stay awake and watch a movie.
The first 90 minutes Per was awake, after that he got a little fidgety and we went ahead with sedation. However, the fact that he was able to lay there for 90 minutes was awesome!
After the scans, the surgeon came to talk to us and informed us that the 1 cm lesion they had seen the other day was gone/collapsed. In other words, there is no reason/way to go back in and remove it. Also, he told us that the spinal cord MRI looks normal!
This means that surgery today was cancelled! What a blessing! We are expecting that Per will have his bone marrow biopsy today, but we should be able to GO HOME TODAY!
Praise the LORD, today is a good day for miracles!
The next steps will be the bone marrow biopsy (today) and then the decision will be made about further treatment. This will almost certainly include radiation treatment and possibly chemo.
Thank you all for your fervent prayers for our family. We have much to be thankful for.
Thor and Kristen
Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.
Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!
Summer and winter and springtime and harvest,
Sun, moon and stars in their courses above
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.
Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!
Wednesday, January 3, 2007 5:32 PM CST
We just received news that Per's bone scan was normal. PRAISE GOD!
The next big things are:
1) we need a normal spinal cord MRI tomorrow. If there is cancer on the spinal cord, Per won't have further surgery to remove the brain tumor.
2) Safety during surgery tomorrow
3) Negative bone marrow test tomorrow
THANKS!
Tuesday, January 2, 2007 7:32 PM CST
Good evening friends, family, and prayer partners:
We just have a couple of updates.
Praise: Per is really using his left hand a lot today, even without prompting. He has been talking and alert a whole bunch this afternoon, and participated in physical therapy.
Prayer: Tomorrow he will have his bone scan and later this week an MRI of his spine. Also, at the time of his repeat surgery they will perform another bone marrow biopsy. These tests are to look for spread of his cancer and will definitely affect long-term prognosis and treatment.
On Thursday morning Per will have another head MRI to "map" the exact location of the remaining tumor and then probably go to surgery soon after that.
After surgery, we will most likely return to the ICU, but for now we are back on the oncology floor, which is very friendly to family and guests.
Please pray diligently about the repeat surgery and the other tests to look for spread of cancer. This is an incredibly crucial time for Per and for us.
Thank you!
Thor and Kristen
Tuesday, January 2, 2007 1:08 PM CST
Already today, Per has been visited by physical therapy and occupational therapy. He is doing a great job of walking, and is using his hand more and more.
He really does get tired easily, not surprising given the sleep situation here and healing from surgery.
Haven't really had a visit from the neurosurgeon or oncologis today, so kind of waiting on that for further planning.
Monday, January 1, 2007 1:27 PM CST
Per just finished 2 hours in MRI, where they re-scanned his head and also did some follow-up pictures on his right thigh, the site of his original tumor.
The neurosurgeon feels that there is still some cancer in his brain and is recommending that Per have more surgery later this week to remove another small portion. This should give Per the best chance for cure.
It was a difficult night in the ICU, for Per and Thor, with lots of nurses checking through, beeping monitors, a hungry little boy who FINALLY got some pizza and chocolate milk, and pain from the surgery. However, this morning Per seems to have more movement of his left hand, although he is primarily using the right one still. The surgeon seems to feel that Per will maintain at least the same level of function after the repeat surgery and said that Per is "bouncing back" or recovering very quickly.
Thank you for continuing to pray. It's going to be a long week here.
Thor and Kristen
Monday, January 1, 2007 8:45 AM CST
Per is definitely moving his left hand more than before (although he needs reminding that he CAN use it).
Monday, January 1, 2007 7:45 AM CST
It doesn't sound like Per and Thor got much sleep last night. They are waking Per every hour or two to check him out.
Per is expected to get another MRI of his head this morning around 10 and we think they will do his follow-up thigh scan at the same time.
We are unsure about when we'll get to leave the ICU.
Sunday, December 31, 2006 5:45 PM CST
Per is in the ICU, cranky but awake. He's begging for donuts and juice and the nurses are only allowing him ice chips.
His head is pretty swollen on the right side near the incision, but otherwise he looks pretty good.
I'm so thankful to say that his weakness is no worse than it was before surgery. This is awesome, because most likely as the swelling goes down things will continue to improve.
Tomorrow morning he will have an MRI to look at his head again (already had a follow-up CT which looked relatively good), and we're hoping they'll do the MRI of his leg that we were expecting this coming Friday.
So, if he can get some food in his tummy and a good nights' rest he should feel much better.
Sunday, December 31, 2006 12:44 PM CST
Per is out of surgery and going to the ICU. We will be able to go see him in about 45 minutes.
The surgery went much more quickly than expected, and Per did not need any blood transfusions. The area they removed appeared to be the same cancer Per had before. Per will have a CT later this afternoon to look for any bleeding and then tomorrow he'll have an MRI.
Thank you so much for praying.
Sunday, December 31, 2006 11:00 AM CST
Received a call about 10:15 that all is well and they had just started surgery about 10 o'clock.
Sunday, December 31, 2006 9:27 AM CST
Per is in surgery. We expect he will be out of surgery in the mid-afternoon.
Saturday, December 30, 2006 3:15 PM CST
Hello,
Per's MRI was done this morning and also another CT of his head, chest and abdomen.
There is NO EVIDENCE of any other tumor except in his brain. This is extremely surprising, but an incredible blessing.
Our plan is that tomorrow morning he will have surgery to remove the brain tumor. Following that he will be here at least a few days, and then most likely have a bone scan and bone marrow biopsy to confirm if there is any other cancer spread.
Any treatment plan will depend on that additional testing.
So, that's where we are now. Thank you so much for praying.
Please continue to pray for:
1) safety as the Doctors perform this delicate surgery in the morning
2) quick healing
3) peace for our family
We are so thankful for:
1) no evidence of additional spread
2) a wonderful place to come for treatment
3) the prayers of so many people.
Thanks,
Thor and Kristen
Saturday, December 30, 2006 2:24 PM CST
Okay, finally back.
CT's are done, but we don't have the results yet.
Sounds like the plan so far is surgery to remove the tumor tomorrow morning. Then a night or two in the ICU, and then probably bone scan and bone marrow biopsy later in the week to plan for expected additional chemo.
In the unlikely event that this is NOT a relapse of his original cancer, that entire plan will change.
We won't know that until after surgery tomorrow.
Thank you all for praying. It means more than you know.
Kristen and Thor
Saturday, December 30, 2006 11:16 AM CST
Hi. We are back from MRI but have no results.
The Chest x-ray looked normal, which is amazing. Hopefully Per will wake up enough to drink contrast for his CT scans.
Right now I'm trying to find out if the Ronald McDonald house will have a room for us.
If we get the scans all done today there might be a biopsy tomorrow.
Thank you for praying.
Saturday, December 30, 2006 1:38 AM CST
Hello prayer partners.
We are currently at Children's hospital in Milwaukee.
This afternoon Per started to have trouble using his left hand, and a CT scan in the Theda Clark ER tonight showed a tumor in his head.
Of course, our worst fear is that his cancer has returned.
Please pray for us as we have a day full of scans tomorrow, for Audrey as she stays with Thor's parents tonight, and for wisdom for the treating physicians.
Thanks,
Thor and Kristen
Wednesday, December 20, 2006 8:36 PM CST
Hello friends and family,
I just wanted to get a quick note out, before Christmas arrives, and ask for your prayers.
Per will be going in for routine follow-up scans on Friday January 5th, here in Neenah. I expect that we should have those results by the following Monday.
Then he will have his follow-up visit with a chest x-ray in Milwaukee on Friday the 19th.
Per is doing really well, enjoying school and getting along well with the other kids. He is taking swim lessons and looking forward to opening Christmas presents!
Audrey and Thor just returned from a trip to Russia with the Boaz Project (www.boazproject.org) to deliver Christmas presents to orphanages. They were much missed during their absence, but had a great time.
Praises:
1) Per is loving kindergarten
2) Safe travel for Audrey and Per
3) The gift of Christ's birth which has changed our lives
Prayer requests:
1) That Per would tolerate sedation without difficulty
2) Clear scans
Thank you,
Thor and Kristen
Friday, November 24, 2006 3:12 PM CST
Happy Thanksgiving to All!
Yes, I know I'm desperately behind ... thank you for not mentioning it ...
We had a great Thanksgiving celebration with Thor's parents and today harvested our Christmas Tree (only to find that the tree stand we "borrowed" from Carrie and Brandon the last 2 years has been "borrowed" back to them, and thence to Tucson).
Oh well.
Thor and Audrey are gearing up for a whirlwind trip with the Boaz Project to deliver Christmas presents to a number of Russian orphanages. Please pray for them that this would be a wonderful learning experience for Audrey and a good time for the two of them as they develop their relationship.
Per is currently scheduled to have his next MRI on January 5th, and then a chest x-ray and office visit in Milwaukee on the 19th of January. Otherwise we are enjoying our time out of the cancer world, with just one recent trip to the doctor for an ear infection.
Thank you for keeping us in your prayers.
Kristen and Thor
Friday, October 13, 2006 6:00 PM CDT
Today Per and Kristen had a quick trip to Milwaukee for a check-up, but no tests.
Per will have his next set of scans in January 2007. Yea!
Per is really adjusting to school and not nearly as tired in the evenings as we feared he would be.
Audrey got her 1st Quarter report card and did GREAT! Now, if she could just concentrate in class and stop distracting the others. She got braces put on the other day, and looks so grown up. (look at the pictures)
Happy Fall!
Kristen and Thor
Sunday, October 1, 2006 8:07 PM CDT
Fall is upon us!
Even though we are promised warm (and stormy!) weather tomorrow, today was a beautiful warmish fall day.
The kids and Mom trekked off to a local apple orchard/pumpkin farm, for caramel apples and the search for pumpkins too large to be carried.
School seems to be going well for both kids. I think Per is adjusting to a "normal" classroom and Audrey is getting along well with her classmates. She even had a few over last weekend for a couple of hours.
We are also blessed with a wonderful playmate for Audrey right down the street!
Per has a routine visit to Milwaukee coming up in a couple of weeks. We anticipate that it will be pretty low-key.
In the meantime, swimming lessons continue, and Audrey is also taking ballet. Per seems to be fine with a full day of school; not collapsing into bed at 6 pm as I had feared.
We hope you are enjoying the beauty of God's creation this fall!
Kristen
Thursday, September 7, 2006 7:23 PM CDT
Greetings!
Per has been having a great first week of school, although I think it is a little stressful for him to have so many changes at once.
Thankfully, Thor has been home with us this week, and the two guys have been having lunch together each day.
Audrey is really happy about the start of third grade and is really glad to be back to school as well.
This week Per has just half days, but next week starts a whole school day. Please pray that he will be able to stay awake for the whole day without melting down immediately after coming home!
Tuesday, August 29, 2006 9:04 PM CDT
Greetings!
In a brief week Per will be off to his first day of Kindergarten! New clothes, shoes, and exciting "Incredibles" lunchbox are purchased, and we're practicing the teacher's name.
Yea!
Audrey is equally excited about her new teacher and mounds of school supplies.
It's so wonderful to have life going on as usual, as we pass the one-year anniversary of finishing chemo.
Thank you for your prayers on our behalf. We continue to pray for the other children suffering from cancer.
Kristen
Sunday, August 6, 1006 6:23 PM
*******NEW VACATION PICTURES UP*********
Wednesday, July 26, 2006 2:39 PM CDT
Friends, family and prayer partners,
I'm so sorry we did not get out an update earlier, but all of Per's scans turned out cancer-free.
What a blessing! I can hardly believe that it is only a year since his treatment stopped. It truly seems to be a lifetime ago.
We are vacationing and enjoying priceless family time.
Praise God!
Kristen and Thor
Sunday, July 16, 2006 11:24 AM CDT
PER'S MRI LOOKS GOOD!
We will have his Chest CT and Bone scan on the 21st.
Thank you for praying!
Kristen and Thor
Saturday, July 8, 2006 4:57 PM CDT
Dear Friends, Family, and prayer partners,
We wanted to let you know that Per has another set of scans coming up.
This coming Friday, July 14, Per will have an MRI at Theda Clark, here in Neenah. The following Friday, July 21, Per will have a chest CT and bone scan down in Milwaukee.
If these scans are normal, we expect to begin having less frequent visits to Milwaukee for follow up.
Per is doing very well, enjoying summer school, swimming, going with Thor to FedEx to see the planes, and playing with his trains. He really is a joy to have around.
Audrey has been growing and changing so much the past few months, with braces, glasses, learning to ride a bike, and more. We can hardly believe how much she is growing up!
Please pray for us these next few days.
1) Per will be sedated/asleep for the MRI, but awake for the other scans. Please pray that the sedation goes smoothly and that he is cooperative for the non-sedated scans.
2) Please pray for our travel time
3) Please pray that God would continue to keep Per's body free from cancer.
We're so thankful for:
1) how much Per and Audrey are growing and learning
2) that Thor will be home to take Per to his MRI
3) that we will soon have fewer visits to Milwaukee which means MORE family time.
Thank you,
Kristen and Thor
Tuesday, June 27, 2006 7:35 PM CDT
Yea Summer!
We are full swing into summer school, swimming lessons, and Audrey has already returned from her week of summer camp.
I just wanted to post briefly that Per does have scans coming up in a couple of weeks. He will have an MRI of his leg on Friday July 14th here at Theda Clark, and then on Friday the 21st of July he will have his bone scan and chest CT done in Milwaukee.
When those scans are normal, we will be 11 months off-treatment, and the doctors in Milwaukee say we can start making out trips there less frequently. Wow.
Thank you for praying for our family.
Kristen
Tuesday, June 6, 2006 6:37 PM CDT
So, tomorrow is Per's last day of school, and Audrey's is Thursday.
Per has had a really great year at Washington Early Learning Center, and as excited as we are for him to start kindergarten, we'll miss the wonderful teachers and therapists who have worked with him there.
This coming Friday we have another quick trip to Milwaukee. Most likely Per will have scans again in July.
Per's summer days will include participating in a "Kindergarten Readiness" class in the mornings at Wilson school, and then about 40 minutes total of speech and physical therapy each day.
Audrey will be taking swim lessons through the park district, and I'm sure she'll be putting lots of miles in on her new bike! Now that she knows we are within easy biking distance of parks, McDonalds, and Dairy Queen, I'm sure we will get LOTS of requests!
Thank you for continuing to pray for us!
Sunday, May 14, 2006 9:06 PM CDT
Other than fighting an ear infection, Per is doing really well. He is enjoying his swim lessons and had a great time at a friend's birthday party this weekend.
This past Friday, Thor and Per made the trek to Milwaukee for another uneventful visit. It looks like Per's next scans will be in July.
Also on Friday Per went to visitation for his kindergarten. He was very excited, especially when he saw one of his current classmates there. I have to admit Mommy was a little nervous seeing all of the other future kindergartners and wondering just how Per will fit into the mix.
Audrey's school had their elementary musical this past week and the kids all did a great job!
Thank you for continuing to pray for us.
Kristen and Thor
Sunday, April 23, 2006 7:10 AM CDT
The new picture is from Audrey's ballet recital yesterday. Per wasn't very interested in the dancing, but he DID have a great time digging dirt with Grandpa in the morning!
We have had some beautiful weather, and the kids love going outside, to the park, and playing in the yard.
Per's kindergarten will be having an open house in a couple of weeks. I can't wait!
Kristen
Monday, April 10, 2006 2:28 PM CDT
Greetings!
Well, it does look like Spring is arriving at last. Per has Spring Break this week, and Thor is home from his travels, so I know Per is thrilled about that!
This Friday we are going to Children's for our regular check up, but there aren't any tests being done, so it should be pretty calm. Actually, that day Audrey will be participating in a "Sibling Day" which is put on by SuperSibs, an organization which supports siblings of kids with cancer. That event is at Chidren's too, so it will be fun for her.
The kids are having a lot of fun playing outside in the playset, taking swimming lessons, and Per loves dragging his cars and airplanes around the house to place them in your path.
Per is getting so excited about kindergarten starting in the fall. He loves to be able to point out "my new school" as we drive by. Of course the downside of kindergarten is ... kindergarten immunizations, but at least we're done with those now.
Happy EASTER!
Kristen
Friday, March 17, 2006 12:26 AM CST
Hi, just wanted to let everyone know that all of Per's 7 month off-treatment scans this week turned out normal!
Such a blessing, thank you for praying.
Kristen
Monday, March 13, 2006 6:09 PM CST
Hello friends and prayer partners,
Per had his routine follow-up MRI this morning at Theda Clark Hospital and it was uneventful.
The initial reading on the MRI is unchanged from December, so that is a blessing. The radiologists at Children's will compare it themselves later in the week.
On Thursday Kristen will be taking Per to Milwaukee for his routine Chest CT and x-ray.
Thank you for your prayers!
Kristen
Friday, March 3, 2006 2:55 PM CST
Yea! March is here! Spring is ON IT'S WAY!
Just a few quick things. Per is doing great. We had a really good meeting with his teachers to plan for next year and kindergarten. He is working hard to learn his letters and numbers, and we are very excited by that.
Per will have another MRI of his leg on March 13, here in Neenah. He will have his Chest x-ray and Chest CT in Milwaukee on Thursday the 16th. Then it will probably be 3 months until he has additional scans.
Funny story: Audrey came home from church with a piece of paper marked, "Ticket to heaven," last Sunday. So, we started the conversation with Per .... "Per, how do you get to heaven?"
"Airplane?"
"Nope."
"Dive Car?"
"Nope."
"On Train?"
"Nope."
The explanation that you have to trust Jesus with your whole life wasn't quite as easy for him to understand, but it was fun to see the wheels turning! Reminds me of that song, "Oh you can't get to heaven ... on a roller skate..."
Thank you for continuing to pray for us.
Kristen
Thursday, February 16, 2006 1:50 PM CST
Hi all-
We are in the midst of a big snowstorm today, so both kids are off of school! Yea! That makes a short week for Per, as he didn't have school on Monday, either.
Tomorrow, weather-permitting, we are heading down to Milwaukee for Per's monthly visit. We don't have any tests scheduled this time, so that is good. From time to time, Per still complains about his foot, but it's not as predictable as before.
Next Monday, Thor and I sit down with Per's teachers and therapists to have a planning meeting for the rest of this year and heading into kindergarten. It's exciting and scary at the same time!
Thank you for continuing to pray for us.
Kristen
Friday, February 3, 2006 7:56 PM CST
Life is pretty quiet around here. Per doesn't complain about his foot hurting as often as he was. Audrey is battling a nasty cough, but is otherwise well. Thor is longing for the golf season, and ... I'm longing for Spring as well!
Last Sunday we went to see "Clifford the Big Red Dog" in Green Bay. It's always so fun to watch the kids while they're watching the show! They just enjoy it so much and there is such excitement in their eyes. Thanks for the tickets Grandma Julie!
Some new snow arrived today, returning us to a lovely whiteness that we expect in February.
Friday, January 20, 2006 9:11 PM CST
Sorry to post so late.
All went well with Per's scan today. Per and Thor headed out the door about 6:15, had safe travel, and got to Children's in plenty of time.
Per even managed to lay on the scanning table for 2-15 minute periods, with a movie playing. This is such a miracle, as usually it would be a battle to even get him to SIT on the table. What a blessing and amazing growth in maturity.
There weren't any abnormalities on the bone scan. The cause of Per's discomfort isn't clear, but doesn't seem to be anything "bad." It could just be related to some changes in the way he is walking or using the stairs. We'll continue to watch him for now.
Thank you for praying.
Kristen
Thursday, January 19, 2006 8:07 PM CST
Quick prayer request:
Per will be having a bone scan on Friday the 20th to evaluate some pain he is having in his left foot. The x-rays of his foot and his right leg (where his tumor was) are normal, but he has been complaining off and on of the pain for a couple of weeks now.
Please pray that the scan will go smoothly, that we will find an answer to his pain, and that Per and Thor will have safe travel to Milwaukee.
Thanks!
Kristen
Tuesday, January 10, 2006 8:00 PM
Per turns 5 years old tomorrow, January 11th!
**************************************
Tuesday, January 3, 2006 10:34 AM CST
Hi there.
All is well with the Thomsens. Thor returned from his business trip to Germany just before Christmas, and it was wonderful to all be together and celebrate Christ's birth and enjoy our family time.
Per and Audrey both had wonderful Christmas programs at school. I only wish I could show you Per's dancing to "Feliz Navidad." Too hilarious. You could see him concentrating on moving his arms, then his hips, and trying to sing along. Of course, all 3 never got going at once, but he looked like he was having a great time.
I was reflecting this morning about the events of the past year. Last January we were preparing for Per's surgery to remove one of the major muscles from his leg. Then we had ongoing concerns about the fluid in his leg and he wore that ACE wrap seemingly forever. (Thank you for your prayers - it's all but gone now). 20 sessions of radiation and living our weeks at the Ronald McDonald House brought us to Spring and less frequent chemo.
Per and Audrey finished their school year, and we had 24 hours of wonderful Family Camp before taking Per to the hospital for a fever. After driving several hours in a terrible rainstorm, Per had his first hospitalization for fever in 9 months of chemotherapy. At the end of August, Per had his last chemo and headed back to school.
We watched Thor run his first marathon, Kristen had back surgery, and both kids returned to swimming lessons this fall.
Per also had 2 sets of normal scans, in August and December, and had his port-a-cath taken out in September.
We are so thankful for the prayers of you all through this time. We know we could not have done this well without God's grace and protection.
The next thing on our schedule is a trip to Arizona for a late Christmas with Kristen's siblings in mid-January, and just after that Per's monthly visit to Children's with just a chest x-ray and blood counts. Per will continue to have other scans every 3 months or so.
Happy New Year,
Thor and Kristen
Friday, December 16, 2005 5:46 PM CST
I just wanted to let all who are waiting know that
PER'S CHEST X-RAY AND CT SCAN ARE NORMAL!!!
So happy, such a blessing.
Thank you for your prayers. It was a little edgy when we first got into the CT room, but with a little comforting from Grandma Julie and coaxing from Mom and the distraction of "The Incredibles," Per settled down and was very still.
I know that next time (3 months) will be even easier for him. We return in a month for just a chest x-ray and blood counts again.
Thank you for your prayers,
Kristen
www.caringbridge.com/wi/pthomsen0111
Wednesday, December 14, 2005 9:07 PM CST
The time is quickly approaching for our next journey to Children's Hospital.
I'm actually looking forward to attempting the CT scan while Per is awake, because I think it will be a big milestone for him. He has been so good recently about taking his weekly antibiotics, sitting for his last chest x-ray and going to the dentist and doctor appointments.
Nonetheless, I AM going to give him a little bit of a sedative on the way Friday morning, just to take the edge off this first time.
Tomorrow evening, both Audrey and Per have their Christmas programs at school! I'm sure it will be a kick watching Per's class, and Audrey is very excited to have us there to see her performance. Also, next Sunday Per's Sunday School class will sing a couple of songs in church. That I can't wait to see. It's so fun to see him enjoying school and church and getting excited about his friends.
Audrey and I have been having a good time snuggling on the couch in the morning, reading through the Narnia series. It would probably help if we had a bigger blanket, but we get along okay. It's a fun half-hour for the two of us, while we delay the reality of the day ahead.
Please keep praying for Per's scan this coming Friday.
Kristen
Saturday, December 3, 2005 4:15 PM CST
The report from Per's MRI yesterday (as read at the local hospital) is no sign of cancer, and the fluid is about half what it was on the last MRI (already unnoticeable to us).
Thank you LORD!
The MRI will be compared by the radiologists at Children's as well, probably this coming week.
Our next hurdle is Per's CT of the chest in 12/16. We're going to try to do it without sedation. Start praying now that it would go well.
Thanks!
Friday, December 2, 2005 3:58 PM CST
We are home from Per's MRI.
The worst part of the day was his grumpiness from being so hungry, and asking for food. Other than that, he did wonderfully at the hospital. And, before that Per and I actually got some Christmas shopping in, trying to stay out of the kitchen.
I anticipate we'll see the results on Monday or Tuesday.
Tuesday, November 22, 2005 1:19 PM CST
Okay, Per's chest x-ray was fine.
Yesterday I was able to schedule Per's MRI of his leg for December 2nd, and he'll have a chest CT (unsedated!) on December 16th. That'll also be the date of his next check up at Children's.
Happy Thanksgiving all!
Friday, November 18, 2005 8:28 PM CST
I'm not really sure of the results of our visit today. I think we'll hear about the chest x-ray results on Monday.
However, it also turns out that Per will have other scans done next month, including an MRI of his leg and a chest CT. We're going to try to do the chest CT for the first time without sedation.
So, it was a long and exhausting day, including some grocery shopping, and buying boots for our little cheeseheads, but the kids are settled in bed now.
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Wednesday, November 16, 2005 6:40 AM CST
Dear Friends, Family and Prayer Partners:
In two days, we will be taking Per down to Children's Hospital for his 3 month "off-treatment" visit. It will only include a chest x-ray and physical exam. We anticipate that he won't have any further CT scans or MRI's until he is 6 months from the end of his treatment.
It is hard to believe that 3 months have passed since his last chemotherapy treatment. Per looks so wonderful now, his hair is long enough to look messed up, and comparing his school pictures from this year to last shows how much more color he has in his face now. He is really enjoying school, loves playing with Audrey, and adores his Daddy more every day.
We had an incredible time on our Make-a-wish Disney cruise. It was amazing to be able to share that experience with Per, from the limousine drive to the airport, to a personal visit with the ship's captain, and of course the excitement of seeing Mickey and Minnie! Per just loved being able to eat cheese pizza for every dinner (.... it's only a week, Mom!), and discovering chocolate smoothies. Seeing a shark from our submarine tour and floating on the ocean with Mom in the sunshine were brand-new experiences for us all.
From day to day with Per, we are reminded that God is truly in control of his life, and that our son has not been abandoned by God. We know that his life holds many challenges, even outside of his cancer diagnosis, and trust that whatever happens is part of God's bigger plan for Per.
Thank you for continuing to pray for our family.
Praises:
1) Really seeing our little boy return to "normal"
2) A wonderful Make-a-wish trip
3) Time for our family to rest and relax together
Prayer Requests:
1) Our visit this Friday to Children's
2) Per's ongoing educational challenges
3) Permanent healing from cancer for our son
Thank you,
Kristen and Thor
Josh 1:9
Have I not commanded you? Be strong and courageous. Do not be terrified;
do not be discouraged, for the LORD your God will be with you wherever you go."
NIV
Monday, November 7, 2005 8:04 PM CST
Please check out Per's new webpage at www.caringbridge.org/visit/perthomsen
Sunday, November 6, 2005 6:19 PM CST
We are finally home.
We had the most amazing week together as a family. It was a blast to enjoy our time relaxing, swimming, seeing the great Disney shows, eating incredible food, and enjoying exciting new places.
As a parent, it was such a blessing to see the excitement on the kids' faces as they partook of each new experience. Remembering how stressed out we were a year ago, and how sick and scared Per often felt, it was such a wonderful change.
Check out our new pictures!
Kristen
Sunday, October 30, 2005 6:57 PM CST
We are having a great time aboard the Disney Magic.
Today we had breakfast with Mickey, Minnie and friends, and this afternoon a photo op with pluto and later with Cinderella! So fun. It's such a blast watching the kids faces as they experience it all.
Thanks to Hurricane Beta, we are having some rough weather, with gray skies and rowdy seas. The pools are closed, so most people are looking for indoor excitement, making things a bit crowded! However, we are hoping things will clear by the time we go ashore on Tuesday morning.
Per is feeling great, and Audrey was queasy this morning, but seems better now.
We are all exhausted and relishing our sleep and wonderful meals!
Kristen
Wednesday, October 26, 2005 8:25 AM CDT
Hi! I'm sure some people are getting concerned, so ...
The kids and I had a great weekend in northern Florida. The hurricane's approach didn't affect us at all. It was really hard to come back to the COLD Wisconsin weather, though!
The kids had a great time playing with their friends in Florida, swimming, and getting away from school.
We are beginning to get prepared for our Disney Cruise departing this Saturday. We leave the house at 4:40 AM. Yikes! We are all very excited, though.
Praises:
1) Our Make-a-wish trip has arrived!
2) Per is getting more color in his cheeks all of the time, and his hair almost looks NORMAL (as if he's had a very very short cut)
3) We get to spend a week of fun family time!
Prayer requests:
1) For safe travel and good weather
2) Plenty of rest for small children!
3) For Audrey to get her school work done as she will miss a whole week.
Thanks! I'll update when I can.
Kristen
Sunday, October 16, 2005 7:45 PM CDT
Hi! We were able to participate today in an outing to the GreenBay Tundra Lodge waterpark, with a group of families who have children with cancer. It was so much fun, and Per absolutely LOVED the waterslides! Audrey took a little more convincing, but finally got into the swing of it. Would someone please remind my family that the LAZY River is supposed to be LAZY and not a splash-fest! We were able to meet some other families from the group, and look forward to getting to know them over the coming months.
I'm posting pictures of our time with Grandma and Grandpa yesterday, canning 55 quarts of homemade applesauce. We had a great time. The kids helped with the peeling, took scraps out to the deer, and Gramma and I hunkered down in the kitchen, cooking the apples up. It's a wonderful tradition for us.
This Wednesday, I am taking the kids to the Pensacola area to see our friends who recently moved there from Indianapolis. Please pray for our numerous flights, sleep, and relaxation!
Kristen
Thursday, October 13, 2005 5:05 PM
We're doing fine and are home. Thank you for your prayers!
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Thursday, October 13, 2005 12:36 AM CDT
Hi! Per is in surgery, and has been doing great this morning. It is amazing to see how relaxed and at home he is compared to a year ago! He has been glad to see the familiar faces we have spent time with these last many months.
I'll update later.
Kristen
Tuesday, October 11, 2005 9:42 AM CDT
Dear friends, family and prayer partners,
In only 2 days, Per will be having his port-a-cath taken out. For the first time in a year, there won't be a bump under the skin of his chest, announcing that he is receiving toxic chemicals into his system. As his hair begins to grow back, it seems possible that he will actually LOOK like a normal child. It's so incredible. I know a year ago we were very afraid that we would never reach this point, and that we would lose our baby boy. We praise God that Per has had such a successful course of treatment.
We anticipate that Per will continue having scans every 3 months for the next few years, to look for any return of cancer, but otherwise our schedule is back to normal!
On October 29th, we will be heading to Florida to take a Disney Cruise for Per's Make-a-wish trip. I am longing to see the kids faces when they realize the "boat" is really a hotel-sized Ship! It is going to be a wonderful celebration for us all.
Praises:
1) Continued health for Per and Audrey
2) Hair!!!
3) Having a whole extra day each week NOT devoted to long drives and chemotherapy!
Prayer Requests:
1) for Per's surgery to go smoothly, We don't anticipate it will take more than an hour, but we'll still have the sedation to contend with.
2) Safe travel on our cruise
3) That we could relax and enjoy our family time
Thanks for continuing to pray for us and for Per specifically.
Kristen and Thor
Tuesday, October 4, 2005 9:02 AM CDT
Just 9 days until Per has his port taken out. What a wonderful symbol of the end of his treatment! Yea!
This week we have the usual busy-ness. Per has taken to telling us each morning that it is a "Blue Day." This, apparently, has something to do with the color of the sky, but this morning he announced it was a "Red Day," as a tree behind our house has turned bright red. It's beautiful.
Audrey is concentrating on earning shopping money for the Disney Cruise, and Per and I worked on riding his bike without training wheels over the weekend. Yikes! We'll try again later!
Per's hair is about 1/4 inch long, and every day it seems to grow and grow. You can really see his eyelashes, and they add so much definition to his face. It's great.
Hope you are all enjoying the fall weather and God's beautiful creation.
Kristen
Monday, September 26, 2005 8:46 PM CDT
Yesterday, our family had the excitement of watching Thor finish the Fox Cities Marathon! The kids were so excited to be cheering for their sweaty dad!
Per is starting to get a little peach fuz. It's not enough to photograph; it looks more like a 5 o'clock shadow right now, but... a couple more weeks and who knows!?
Per is still loving school and his friends. His counts are coming up, and we are working on giving up his afternoon nap.
Just 2 1/2 weeks until Per's port comes out!
Thanks for praying for us.
Kristen
Tuesday, September 20, 2005 7:32 PM CDT
Our day at Children's wasn't too long, but we're glad to be home.
Per's CT scan, chest x-ray and bone scan were all normal, with the exception of some "increased uptake" in the area of Per's right hip. This means that the bone has something going on there. However, this area was just checked out on Per's MRI a couple of weeks ago, so the most likely reason is that Per is walking differently because of his surgery. It was also abnormal on the last bone scan, so it's not a change.
We have scheduled for Per to have his port-a-cath out on the 13th of October. This is the central i.v. that he has received his chemo through the last year.
We praise God that all was good today!
Kristen
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Saturday, September 17, 2005 9:12 PM CDT
We had an extremely busy, exciting, and tiring day at Quarry Quest. We got to the quarry just after 9 am and stayed until about 1 p.m. The Kasemeier family joined us, and the kids operated backhoes, looked for fossils, took a spin in the crane, toured a fire engine, made their own concrete, and rode in the back of a huge dumptruck.
They all had a wonderful day.
I do think we're starting to see some eyebrows and eyelashes on our little bald-headed boy. Yea! It will all come with time.
This Tuesday morning, Grandma Julie, Per and I will head down to Milwaukee for Per's remaining scans: a bone scan, CT and chest x-ray. Then in the afternoon we'll have the results! So, it will be a long day, but we're looking forward to having this first set of scans done.
Good night!
Kristen
Sunday, September 11, 2005 1:33 PM CDT
I scoped out the report of Per's MRI this morning, and it looks great!
The only abnormality is the remaining fluid, which is basically 1/2 inch x 1/2 inch by 5 inches long! Yea!!! Praise God.
The rest of Per's scans are on Tuesday the 20th.
We are getting ready for a very exciting local event this coming weekend, Quarry Quest. It's held at a local quarry (duh.) and the kids can drive/ride in all kinds of diggers and dozers, make their own concrete, lay brick and just be dazzled by the size of the quarry. Check it out www.quarryquest.com !
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Friday, September 9, 2005 2:02 PM CDT
Per came out of the anesthetic around 12:30 and did really well. He was very calm and didn't cry or complain at all. That is a huge blessing. Thank you LORD!!
I don't think we'll have the results until early next week.
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Thursday, September 8, 2005 7:16 AM CDT
Just a quick prayer request. Tomorrow Thor will be taking Per to Theda Clark for his MRI. Last time, the whole procedure took FOREVER, although it depends on how long Per's sedation lasts.
Please pray for Thor as he sits waiting at the hospital, and for Per, that he wouldn't be too anxious and wouldn't have a hard time coming out of the sedation.
It will be nice to have this scan done locally, because Per is so grumpy after the sedation, and a 5 minute drive home is a lot better than a 2 hour drive.
Kristen
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Tuesday, September 6, 2005 1:20 PM CDT
School has started!
Per returned to school this morning. He was glad to see his old classmates, and meet some new ones as well. Unfortunately, Mommy has passed on her recent cold to him, so he's sniffling and coughing a little.
Audrey had her third day of school today, and was so thrilled after the first day last week that she wrote a SONG about how much fun second grade is! What a blessing, as she was dreading the return to school. There are only 5 girls in her class, and one lives just a mile from us. It sounds like they will be coming home on the bus together every day, and that will be a lot of fun for her.
We had a nice Labor Day, hanging out with cousins and eating too much.
Thank you for praying for us. As soon as we see some hair, we'll post pictures of it!
Kristen
Tuesday, August 30, 2005 2:35 PM CDT
Dear friends and prayer partners:
Over a week has passed since Per had his final chemo treatment. We were very blessed that his nausea was milder than ever before. Now, we have finished his post-chemo injections to prevent infection, and are just waiting for his follow-up scans to be scheduled.
Once the scans are completed, and all is clear, Per's "port," the intravenous access which sits just under the skin of his chest, will be removed. After that, we'll have repeat scans every few months.
Per returns to school later this week. We have a classroom visit on Thursday, to meet his new teacher, and then next Tuesday is his first official day. I'm hoping that many of his classmates will be returning. It will be really special for Per to see them again.
Right now, we are planning for Per's Make-A-Wish trip at the end of October. We are so excited to have this special time for the four of us, relaxing as a family, and enjoying the end of Per's treatment.
Many parents describe this time as more challenging than chemo, as the "fighting" is over and they wait for the possible return of cancer. We know that whatever happens in Per's life, God is in control and has known Per's path from the beginning. Our prayer is that we will enjoy each day with our son, not living in fear, but trusting God who has been so good to us in every way.
Praises:
1) for an Excellent last chemo
2) the completion of 11 months of treatment
3) the start of school this week for both Audrey and Per
Prayer Requests:
1) that Per's scans would go smoothly (MRI scheduled for 9/9 at Theda Clark, where Thor will sit in the waiting room), the other scans will be in Milwaukee and aren't scheduled yet.
2) for both kids to adjust to new teachers this year and find encouraging friends
3) that Thor and I would continue to be at peace now that treatment is over.
Thank you for your ongoing prayers,
Kristen and Thor
Phil 4:6-7
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Sunday, August 28, 2005 7:26 PM CDT
Today we went to see Thomas the Tank Engine on tour in northern Illinois. The Kasemeier family joined us, and it was so EXCITING!!!
Per has been so spoiled the last week. Per and Thor were able to tour the "back" of the local FedEx facility, even got to sit in the plane cockpit, and see all the packages get loaded. Then getting to ride on Thomas today.... what a THRILL for a little boy!
The rest of us are enjoying watching him (and that cute Sir Topham Hatt).
Enjoy the end of your summer!
Kristen
Friday, August 26, 2005 2:35 AM CDT
Thought some of you would like to know that Jason, who we asked you to pray for months ago, has lost his battle with rhabdo and gone home to the Lord.
www.caringbridge.com/tn/jasona
Please pray for the comfort of his family with this terrible loss.
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Thurday, August 25, 2005 6:39 PM CDT
Per has been doing well this week.
On Saturday afternoon we will be heading down to Illinois and seeing Thomas the Tank Engine on Sunday morning! Yea!
We're so excited to get to spend time with friends and to have this special outing for Per.
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Tuesday, August 23, 2005 9:13 AM CDT
Oops! That took a while to get around to updating!
Per did really well, and only had one episode of vomitting. What a blessing!
Now we're just waiting to get called about the timing of his follow-up scans in a couple of weeks.
I'm putting NEW PICTURES up today1
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Friday, August 19, 2005 4:26 PM CDT
We're home from chemo ... camped out on the couch, and just having the start of nausea. Not too shabby for us!
Thanks for your prayers ... I'll try to update tomorrow.
Kristen
Thursday, August 18, 2005 3:20 PM CDT
Counts were a little low yesterday, but today they're GOOD!!! We're on the road for last chemo tomorrow!
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Tuesday, August 16, 2005 2:46 PM CDT
Dear friends, family and prayer partners,
It seems a miracle that we have come to Per's final chemo treatment, later this week.
It's truly a little hard to believe that soon our lives will be changing dramatically again, as we leave our battle against rhabdomyosarcoma and enter "remission" and wait to see what will happen and what God has for our son. This can be a challenging time for families, as they leave the security of chemotherapy.
We truly feel so blessed for how well Per has been doing throughout his treatment. We are incredibly thankful for the blessings of prayer and support from all of you this past year. We know that God has used this time to increase our ability to serve others in the same situation.
Soon the Audrey and Per will be returning to school, the weather will change, and hair will return to Per's head! We are excited for these changes, and for the opportunity to watch our children grow and develop.
Praises:
1) The end of chemo is here!
2) Per will soon be feeling stronger and have more energy
3) We will soon only have to make monthly trips to Milwaukee for follow-ups!
Prayer Requests:
1) For safety during this week's travels
2) That we will have a repeat of the minimal nausea Per had last time
3) For peace as we enter the post-treatment phase
4) For complete and total healing for Per
Phil 1:3-6
I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.
Blessings,
Kristen and Thor
Tuesday, August 16, 2005 7:21 AM CDT
3 DAYS UNTIL LAST CHEMO!!!!
I'm picturing hair growing back! Pink cheeks! Eyebrows and eyelashes!!!
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Monday, August 15, 2005 6:20 AM CDT
4 DAYS UNTIL PER'S LAST CHEMO!!!
If this week's blood tests go well (Wednesday or Thurs), we are off to the last chemo Friday morning!
Please pray with us that the week would go smoothly.
Saturday, August 13, 2005 1:39 PM CDT
Wow, here it is, Saturday again. Only 6 days until Per's final chemo. The last 10 months seem to have rushed by so quickly.
Not much to say today. Per is napping and we are relaxing after running errands this morning. He has been his usual self the last several days, sometimes grumpy, sometimes a blast to be around.
We trust you and your loved ones are enjoying these last days of summer too!
Kristen
Monday, August 8, 2005 2:17 PM CDT
So it looks like today Per will be finished with his post-chemo shots for this round. Yea! His platelets today were still low ... would someone tell that kid to slow down?
All in all, we are all feeling fine, and were happy to have a whole-family-date to seen "March of the Penguins" last evening. It's a documentary about the Emperor Penguins. Very interesting, but I don't think the kids realized it was supposed to be educational. Especially when Audrey said, "I wish the penguins would have talked!"
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Saturday, August 6, 2005 2:47 PM CDT
I know some people get NERVOUS when they don't see any updates....
This week has been uneventful. Per's counts were low yesterday as expected. We were able to go to a local kid's carnival this morning and now he's napping. That kid needs his naps!
So, we're taking a slow weekend and enjoying our family time.
Kristen
Monday, August 1, 2005 10:22 PM CDT
Thank you so much to all who have prayed for us in the last week. This was truly the best chemo Per has had in a while. I think he only threw up 2 or 3 times. He was very sedated by all the nausea medication the first day, but it paid off.
Thor and the kids were able to go to the EAA Air Show in Oshkosh yesterday for a few hours. Audrey and Per loved looking at the planes!
We can't believe August is already here and summer is 2/3 over. To top it off, the end of summer will mean the end of chemo for Per. It's amazing to think we have come this far. We have been so blessed by the love, support and prayers of all of you. We can never thank you enough.
Just being in the hospital last week reminded us again of how much worse things could be for Per and for us. This was Per's first hospitalization for low counts and fever, yet many children are hospitalized repeatedly during their treatment. As exhausting as the last 10 months have been, we know God has been protecting us in many ways.
Per will have another set of scans after his chemo is complete. We are hoping to have his scans locally, because all 3 have to be done on different days, and it will mean a lot of driving or down time in Milwaukee. However, the final decision is up to the oncologists, as to the location of the scans.
Praises:
1) The kids summer programs are coming to a close, meaning more time at HOME!!
2) ONLY ONE MORE CHEMO!
3) The prayers of so many who are trusting God for Per's cure.
Prayer requests:
1) Continued health through the last month of treatment
2) Arrangements for Per's scans to go smoothly
3) Rest and refreshment for us as a family
Thank you for keeping Per and us in your prayers.
Kristen and Thor
Saturday, July 30, 2005 9:00 AM CDT
Per seems to have had a very smooth night. I think he has only vomited 2-3 times since receiving his chemo. He was still sleeping as of 30 minutes ago!
Thank you for praying for him and for his nausea.
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Friday, July 29, 2005 8:33 PM CDT
Because of delays at clinic Per and his entourage didn't get home until the late afternoon, but are all well settled now. He received extra doses of his anxiety/nausea med and has only vomited a few times (although that also means he's been sleeping a LOT and VERY calm).
Still that's very good and we're looking forward to finishing this treatment and entering the 3 weeks until the LAST CHEMO!!!
Thursday, July 28, 2005 3:35 PM CDT
Just a quick note:
We returned home from the hospital late last evening. Per is doing well, and his counts were high enough this morning to go ahead with chemo tomorrow.
Per is coughing a lot, probably from the virus that brought his counts down in the first place, and I'm concerned that could mean more vomiting. Also, we don't want the cold to turn into something worse, but the doctors think it's okay to proceed.
Please pray that all will go well tonight and tomorrow. Once this chemo is finished we have ONLY ONE MORE!!!!
Thank you for all of your prayers this week,
Kristen and Thor
Wednesday, July 27, 2005 9:49 PM CDT
We are home!
Thank you, LORD!
Tomorrow we will go to get Per's bloodwork done, and if all is well may still do the "long" chemo as anticipated on the 29th.
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Wednesday, July 27, 2005 1:17 PM CDT
The news this morning was that we would have to stay another day, awaiting Per's final culture results from Marshfield (48 hours). However, after pushing a little, it sounds like they may get the 48 hour report tonight, which would allow us to head home late this evening.
Per is feeling fine, eating, and not having any more fever. He's also not getting much sleep here, so we're anxious to head home.
Please pray that the doctor would be agreeable to let us go home if the report is normal.
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Tuesday, July 26, 2005 10:13 AM CDT
Good morning,
Per's counts are lower today. They are under 300, yesterday they were 400. A normal "count" is about 7000. So, we remain at Children's, and Per is receiving antibiotics and watching lots of videos! He feels absolutely fine, except for being stressed about being in the hospital.
Today will be just resting and waiting. I think Per's counts have to be above 500 for us to leave.
Thanks,
Kristen
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Monday, July 25, 2005 7:53 PM CDT
Our trip has been cut short by another fever. Per's counts are also quite low, so we are headed down to Milwaukee to have him admitted.
This is all disappointing, but we have been blessed to not have any admissions before this.
Please keep us in your prayers, as Audrey remains at Family Camp with our friends.
Kristen
Saturday, July 23, 2005 7:31 PM CDT
Per's fever was back this morning, and earlier this afternoon, but now seems to be gone. In every other way, he is acting normally, except when his temp is high.
So, we are starting to pack, and if all seems well in the morning we will be heading off to Family Camp!
Thank you for your prayers.
Kristen
Friday, July 22, 2005 8:55 PM CDT
This day has not gone exactly as planned ...
We had a great trip to chemo and the zoo. Then, on the way home Per started feeling nauseated and threw up once, just a few minutes from home. Once we arrived home, Thor took Per's temperature, 102.7. So, we were quickly off to the ER, where Per continued vomitting.
The ER didn't find anything unusual, though. So, we're back home, and Per's sleeping now. When I last tried to give him some additional nausea medicine, he threw it up.
Please pray that the vomitting will stop, no one else will get sick, and that Per's fever will stay away. We are only 36 hours from our departure for Family Camp!
Kristen
Thursday, July 21, 2005 3:25 PM CDT
Hello friends and prayer partners,
Tomorrow morning we are headed off for the LAST SHORT CHEMO. I can hardly believe the time has arrived! Then a quick trip to the zoo with friends, yea!
On Sunday we are off to Family Camp. It just gets more fun each year as the kids get used to being there and start to anticipate and enjoy each part of the experience. We so excited, but always dread the end.
Hopefully, the day we return home we will go for Per's labwork, and have him set up the following day to receive his NEXT TO LAST LONG CHEMO on the 29th.
So, please keep us in your prayers as we head into the final stretch of Per's treatment. We are so thankful for how well everything has gone so far and truly appreciative of all your love and support for our family.
Kristen
Tuesday, July 19, 2005 2:57 PM CDT
We found out yesterday about another child with Rhabdo who is going on Hospice. Please pray for peace and comfort for his family. The tragic truth is that when these kids relapse, their chance of survival are very low.
http://www1.caringbridge.org/mn/ericdakota/
We know that whatever happens to Per, God is with us. We know that he has a perfect plan for Per, and we are so thankful to have each day with our kids. We are thankful that Per's chances of cure are high, but whatever happens, we are in God's hands alone.
Kristen
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Sunday, July 17, 2005 2:57 PM CDT
We now have only 2 "long" and 1 "short" chemo's left! I can't believe that the days of chemo are coming to an end.
We have been reading a lot recently about the adjustment to being off of treatment. Many families say that this is a difficult time as you are no longer "fighting" the cancer, and just waiting to see if it will come back. This is a time of frequent follow-ups, scans, and ... waiting. It's not to early to start praying that we will have peace as we begin to return to regular life. The last 9 months have been directed at this treatment, and it will be a big change for us.
Per is a little crankier than usual. I don't know if it's the heat, or low counts, or ... sin nature. So it's a little hard to get along with him right now. Thankfully there are wonderful charming moments as well.
In just a week we'll be off to FAMILY CAMP! We're so excited to see familiar faces and hang out with Allison and Rylie Staman (and their parents, of course). So, we have a lot of preparation and excitement this week!
Kristen
Tuesday, July 12, 2005 2:37 PM CDT
We are fully recovered from last weekend's chemo, leaving just two "short" and two "long" chemo's left.
Thank you for your prayers for Per. He was certainly more calm even before I gave him the medication to prevent anxiety. He did vomit quite a bit after receiving the chemo, but I think he did as well as could be expected, and slept well that night.
Have a great week!
Kristen
Saturday, July 9, 2005 9:41 PM CDT
It's always amazing to me how Per just lights up and takes off once his i.v. line gets taken off. It's as though the portable backpack actually weighs 50 pounds and he's incapable of moving while it is attached to him by 5 feet of tubing.
So, the line came out this noon, Per ate like a linebacker at suppertime, and fell asleep, exhausted, by 8:30.
Thank you, Lord.
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Friday, July 8, 2005 4:01 PM CDT
Well, we are back home. Per was very ... relaxed this morning, which was nice. He has vomitted a few times, but generally just vegging in front of the TV.
I can not say how good it is to be in our own home and not tied up in a hospital room.
Kristen
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Thursday, July 7, 2005 6:16 PM CDT
Per's counts were a little low yesterday morning, so we had them repeated again this morning (after running the halls at the hospital), and they were almost DOUBLE!!!
So, we're off early tomorrow morning for chemo.
Kristen
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Tuesday, July 5, 2005 8:49 PM CDT
Hello family, friends and Prayer partners,
Tomorrow Per will have his counts checked to determine if we can expect chemo on Friday. If all is good we will have the remainder of his bloodwork and line access on Thursday.
Thor will be traveling, and Kristen is working both Wednesday and Thursday, so please pray the timing will work out to get it all accomplished.
Then, we will head down for chemo Friday morning. The nurse practitioner has given us some additional anxiety meds for Per to take Thursday night and Friday morning. Hopefully this will prevent the severity of pre-chemo nausea.
Praises:
1) a great time at the fireworks
2) wonderful summer weather, including thunderstorms!
3) getting to see family this weekend
Prayer Requests:
1) Per's counts tomorrow
2) Other preparations for chemo and
3) NAUSEA PREVENTION and treatment.
Thank you all for being a blessing to us.
Kristen and Thor
Sunday, July 3, 2005 7:01 PM CDT
Just a quick update on this holiday weekend.
Audrey, Per and Kristen were able to spend a few hours at the Milwaukee Zoo after chemo on Friday. It was fun, and the cloudy cool weather kept us comfortable.
Hope you are all having a wonderful weekend.
God Bless America,
Kristen
Tuesday, June 28, 2005 2:29 PM CDT
Hello friends, family and prayer partners.
As you know, Per did receive his "long" chemo about 10 days ago. Then last Friday we went for more "short" chemo. This was the first "short" chemo we have had in about 8 weeks, and typically this treatment doesn't make him feel sick. However, the night before I made the mistake of mentioning we would be going to the hospital the next morning, and Per was extremely angry and agitated. In the morning, when I put the cream on his chest to numb his skin, he started crying and saying his stomach hurt. It was heart-breaking. I held him and promised that I wouldn't let anyone make his tummy hurt that day, and then gave him some nausea medication that also helps for anxiety. This week we'll have another short treatment, so hopefully he'll remember that not all the trips for chemo are bad ones.
If all goes well, we have just 2 more months of treatments! I think that includes 3 "long" chemo's and 3 "short." Yea! I can't believe the end is nearing.
Last weekend we were able to participate in "Relay for Life," an American Cancer Society fundraiser back in Waupaca. It was great to see so many faces, and hopefully touch a few hearts.
Praises:
1) Per continues to feel well even when his counts have been extremely low
2) Audrey is showing a lot of compassion and love for her brother
3) We LOVE SUMMER!
Prayer Requests:
1) Per's anxiety about treatment
2) Upcoming "long" chemo on July 8, for wisdom about medications for nausea
3) That we would have plenty of good family time together this summer
Thanks so much for praying,
Kristen and Thor
Thursday, June 23, 2005 11:16 AM CDT
Per has been back to school since Tuesday, and loving it, of course. On Tuesday Audrey started soccer. She had a little bit of a slow start, joining a group of strange kids. Yesterday we moved her to a little easier swimming class and she seems very happy with that. So, we're BUSY!!!
Tomorrow is no school, no soccer, no swimming, just going to chemo in the morning (quick), and then DADDY COMES HOME!!!!
Also tomorrow evening is Relay for Life in Waupaca, so if you're in the area, stop by to see us!
Kristen
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Monday, June 20, 2005 9:21 PM CDT
Per seems to be getting back to his normal self. No vomiting today, and I think he'll be back to school tomorrow.
Audrey started swimming lessons today, and I think the hardest part is going to be not knowing anyone there!
We've had some beautiful weather the last few days, and are really getting into the summer mode.
This week marks our return to weekly treatment, but this week and next will be just short chemo. Yea!
Kristen
Sunday, June 19, 2005 12:16 AM CDT
We were in the ER last night with a 102.5 fever, but nothing turned up. It's probably a bug Per picked up along the way, or possibly a medication side effect. But, those 2:30 a.m. returns home are pretty exhausting.
Per was also pretty nauseated during our visit, and yet this morning.
Kristen
Saturday, June 18, 2005 7:56 PM
Per made it through the night without any more vomiting, and even though he did throw up in the morning, we definitely feel nerves played a part in it, as he ate 3 waffles, applesauce, and breakfast sausage IMMEDIATELY after the last spell. The rest of the day he complained on and off, but we really tried to distract him.
Per was still acting glum tonight, but ate a good dinner, so that's awesome.
Thank you all for praying.
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Friday, June 17, 2005 8:01 PM
Per did receive his chemo today, despite borderline counts.
However, he's having a lot of nausea again, and we're chasing it with the additional meds we have this time.
Hoping for a restful night,
Kristen
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Thursday, June 16, 2005 8:21 PM CDT
Per's counts were a bit low today, so chemo tomorrow may get delayed. Thor and Grandpa are going to drive down and have the test redrawn in the morning, but we won't know until those results are back whether the treatment will happen or not.
Next weekend is a really busy weekend for us, and any delay in the treatment course pushes the whole thing back, so PRAY!!!! Pray that Per's counts will be high enough for safety and for him to receive his chemo.
Thanks,
Kristen
Tuesday, June 14, 2005 3:21 PM CDT
A whole week has passed since I updated ... sorry!
Per had his last day of the regular school year on Wednesday last week, and started into "Extended School Year" this morning. Thankfully a few of the same kids from his regular class are in his group, and his usual teachers, so he didn't have a glitch.
Audrey is enjoying her two weeks off of school (had a great time with Grandma and Grandpa last week) and starts swimming and soccer next week. It has been a while since she was last in swimming, probably over a year, so that should be interesting to see!
We have had the usual midwest summer weather of hot and thunderstorms recently, even leading Per and I to sleep on the futon in the basement last week one evening, when the sirens kept going off. It was a fun change of pace!
In a couple of days Audrey and I are heading to Chicago with Grandma Julie and other friends and family for a fun American Girl excursion. Per and Thor will be heading off to chemo with Grandpa. Hmmmm. Which group would you prefer to be with?
Please continue to pray for Per's nausea during this week's chemo. We're getting close to the end now and just want to GET IT OVER!
Some other friends to pray for:
Jason: http://www3.caringbridge.org/tn/jasona/
Orville: http://www2.caringbridge.org/ca/orville/
Stephanie (just finished treatment): http://www2.caringbridge.org/ar/stephanie/
Just a reminder of how terrible this cancer can be.
Kristen
Tuesday, June 7, 2005 2:31 PM CDT
Hello friends and family ...
We are glad that summer has finally come to our area. Per and Audrey are really enjoying the outdoors, getting sweaty and dirty, and playing in their kiddie pool. We are also thankful that Thor has been able to be home the last couple of weeks.
Per's last chemo was more challenging than usual. He started vomiting even before we left the hospital, and continued to be more sick the whole night. It was very frustrating and difficult to watch him feel ill. Even with the clean-up, however, we were still happier to be home in our own surroundings than trapped in the hospital. So, our plan is to have Per receive his fluids before and after chemo at home again next week, and to ask for additional nausea meds. However, it's possible the nausea will continue to worsen with each "long" treatment and that we'll have to give up finishing the treatments at home.
Audrey is off to Grandma and Grandpa's house about an hour from us this whole week. We are missing her lots, but it is nice to be able to lavish attention on Per. He was very sad when Audrey left us on Sunday! Yesterday, Grandpa Paul and Thor were able to join Per for school in the morning, a real highlight for any 4 year-old! (The picture above is of their visit)
Praises:
1) Warm weather and sunshine!
2) Per's counts rebounded quickly from the last chemo, and we are still so thankful for NO TRANSFUSIONS, HOSPITALIZATIONS for fever or low counts, or ONGOING TOXICITY from the chemotherapy!!!!
3) Only about 10 weeks until the end of Per's treatments
Prayer Requests:
1) For Per's nausea to be improved/wisdom about medications for Per's next chemo
2) Thor will probably be taking Per alone for his next "long" chemo in 10 days
3) For continued protection from the bad effects of chemo
Thank you for your continued prayers.
Kristen and Thor
Sunday, June 5, 2005 7:54 AM CDT
Happy Sunday morning!
Per's counts were low (but not AS low) as expected this last Friday. However, aside from some minor bruising on his legs, not surprising for ANY little boy, he seems to be fine.
Thor took the kids to see "Madagascar" on Saturday, and Per loved the lion. Audrey's favorite part was the animals dancing.
It seems summer may have finally arrived and we hope it is here for a good long while!
Kristen
Tuesday, May 31, 2005 6:57 PM CDT
Thankfully, all of Per's nausea has past and life goes on as usual at the Thomsen house. We are so thankful to God that Per has really done so remarkably well on chemo.
Both kids were back to school today, I got to participate in Audrey's field trip to a farm that included a hayride, screaming children, and lots of mosquitoes! It was fun, though.
This week includes daily injections of Neupogen for Per, to boost his falling white blood cell counts, and the usual antibiotics. He seems to be doing really well!
Back to bath time and enjoying the summer-like Wisconsin weather!
Kristen
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Sunday, May 29, 2005 7:04 AM CDT
This weekend was the most nausea Per has had during chemo in a long time. As frustrating as that is, it was still comforting to be in our own home, not have as many interupptions. Per also seemed to be less stressed than he is when staying in the hospital overnight.
So, I think we'll try it again, but maybe with some additional nausea meds.
We're all recovering and looking forward to a nice long weekend!
Kristen
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Friday, May 27, 2005 7:56 PM CDT
We had a very short stay at Children's today. We arrived at 9 a.m., by 9:30 Per was getting his meds, and we left just before 1 p.m. We arrived home around 3:00 p.m.
Per is feeling a lot more nauseated and he is vomitting more than a few treatments ago. We're not sure why that is, but we're keeping up with his nausea meds. It may just be that all this gets worse later in the course of treatment. Please pray that he will get past this phase quickly and back to his normal self.
We'll now have another 3 week break before another treatment, so that is a blessing.
Thank you for praying.
Kristen
Wednesday, May 25, 2005 6:30 AM CDT
Hi,
Just a quick note to say we have a "long" chemo again this weekend.
We're planning to start i.v. fluid on Thursday here at home, so that things can get started quickly once we hit Milwaukee on Friday morning. Nonetheless, we'll probably be at the hospital for 6 hours or so.
Please pray that Per tolerates the chemo, last time he had a lot of nausea. Also, please pray for patience while we're waiting for the medications to be given so we can return home.
We're getting toward the end! Thank you for praying for us.
Kristen and Thor
Sunday, May 22, 2005 8:21 PM CDT
Hi there,
We have just returned from being out of town. Audrey and Per went to Grandma and Grandpa's in Wild Rose, and Thor and Kristen to Minneapolis.
It is the first time we haven't been with the kids overnight since Per was diagnosed. We knew they would be in good hands, and ... they hardly missed us!
So, we're just gearing up for a long chemo this coming Friday. We plan to start our i.v. fluid on Thursday afternoon/evening and drive to Milwaukee Friday morning. Then, we'll hopefully return home Friday afternoon, and Per's line will get unattached on Saturday morning.
It's another busy week!
Kristen
Wednesday, May 18, 2005 6:36 AM CDT
Per's counts (on Monday) were fine, so no more shots until after the next chemo! Otherwise, he's running around, enjoying life as a little boy should!
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Monday, May 16, 2005 6:24 AM CDT
It always amazes me how "normally" Per acts even though his counts are dragging on the floor!
Last Thursday, we took him along to Audrey's Spring music program for school. We were able to find seats right in front of where her class sat, with no obstructions in view, and Per just loved watching all of the kids, the decorations, and the excitement of seeing his BIG sister on stage.
Our little performer didn't mind all the attention! Any time you need her on stage, even if it's with 100 other kids... just ask!
It was so nice to be off of chemo last Friday!
Kristen
Tuesday, May 10, 2005 9:19 PM CDT
Hi all,
Just a brief update on last weekend.
First, all of Per's scans showed NO areas of cancer. We are so thankful that the scans are over and that all was good.
Second, Per had his "long" chemo on Friday. He had more vomiting than usual over the subsequent days, but overall did well. We came home for the after chemo fluids, and were exhausted but glad to be in our own surroundings.
Also, the surgeon checked in with us while we were at the hospital. He isn't concerned at all about the persistent fluid on Per's leg, and doesn't think we should do anything about it at this time.
That leaves only 4 long and 4 short chemo treatments before we end therapy. It also means that we have NO CHEMO this week or next, a welcome break in the schedule.
Thank you for your continued prayers,
Kristen and Thor
Friday, May 6, 2005 9:12 PM CDT
PRAISE THE LORD! All of Per's scans the last two days were clean! What a blessing.
We are finally home, exhausted as usual, but glad for familiar surroundings. Per will be getting his fluids and some meds tonight, and then ... the line comes out tomorrow morning!
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Thursday, May 5, 2005 2:14 PM CDT
The first two scans are finished (the bone scan and CT). Per is sleeping off his drugs, and the we hope to relax and play the afternoon away.
Then ON to tomorrow's MRI!
Kristen
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Tuesday, May 3, 2005 11:20 AM CDT
Dear friends and family,
Those of you who have checked out Per's web site late last week will know that we were very please to find he has not lost any weight since starting chemo 7 months ago. During the same period of time he has also grown almost 2 inches! Wow! So, our 4 year old is still the average height of a 6 year old and the average weight of a 7 year old. So many kids struggle with losing their appetite and not gaining weight during chemo, so we are very thankful for Per's continued growth.
This week is going to be crazy, and we'd really appreciate your continued prayer. On Wednesday night, we'll be packing and also getting our supplies for Per's i.v. fluid.
Then Thursday morning we will leave by 6 a.m., drive to Children's, and Per will get his port accessed. this is consistently traumatic for him recently, so please pray we will be able to comfort him. After that, he'll get an injection for the bone scan, and shortly thereafter go for his CT scan and then the actual bone scan a couple of hours later. Looking at the timing of the scans, I don't think there is a plan to sedate him, but it will be impossible to do the scans without sedation. So, we'll have to see how that affects the timing. Once those scans are done, we'll check in at the Ronald McDonald house, and late in the evening get Per's i.v. fluid running from his backpack.
On Friday morning, we'll go back to the hospital, and Per will have his MRI. He will definitely be sedated for that, and we're not sure what to expect, because it will be his first MRI at Children's. The other two have been done locally. After the MRI, we will be going up to the outpatient chemo floor to get that treatment started. Depending on how long the chemo takes, we hope to come home on Friday night. If it drags on too long, we may decide to stay over again.
We've decided to take Audrey along with us. So, she'll definitely get to experience the excitement of spending time in the hospital! I think she needs a little reminder that it's not just a big PARTY down there!
Praises:
1) After this weekend, we get a break from the weekly chemo, and just have to go every 3 weeks for a while
2) Per's growth is fantastic!
3) Thor and Audrey will be able to come along for chemo and scans
Prayer Requests:
1) Please pray that we'll be patient with each other during our hospital time
2) For the outcome of the scans
3) for safe travel to the hospital
Thanks,
Kristen and Thor
Friday, April 29, 2005 2:54 PM CDT
5 long and 4 short chemo's left! We are getting ready for next week's adventure.
Today the nurse printed up Per's growth chart for the last 6 months or so. It's funny to see that he has grown 2 inches in that time, and his weight has remained about the same. We are so blessed that he has tolerated his treatments so well!
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Tuesday, April 26, 2005 1:53 PM CDT
I guess we're about halfway to our next big chemo now. Per's counts are back up today and that means we can stop his daily injections. Yea!
This week we're back to our usual Friday chemo and preparing for next week's scans. Per's Chest CT will be Thursday at 8:30, his bone scan at 10:00, and his MRI is scheduled for Friday at 9:00 a.m. After the MRI we'll get chemo, and hang around for a while for hydration. I'm hoping we will go home with the iv backpack that evening.
We have only 5 long and 5 short chemo treatments left!
Per's hair has stopped growing, but not that much has fallen out yet. We haven't seen much of a change in the fluid on his leg.
Praises:
1) We're so thankful for the prayers and support of you all
2) Spring is coming (although our Spring weather has disappeared)
3) Per continues to be in good spirits and loves everything about life
Prayer requests:
1) That no new cancer would be seen on Per's scans next week
2) For our travel and Per's sedation for scans
3) That the fluid on Per's leg would be reabsorbed
4) For Per's anxiety about the treatments to be relieved, that he wouldn't be so fearful about every poke
Keep Praying!
Kristen
Friday, April 22, 2005 10:41 AM CDT
We went for chemo yesterday, and all was good. Per's counts are on their way down, and he seemed crankier than usual, but nothing serious.
However, Per has been really anxious the last several times they have accessed his port and when we give him shots at home. He is kicking and screaming and moving continuously as you're trying to poke him, and it's making things very difficult.
Please pray that we will know how to address this anxiety, and that he'll feel less anxious about these procedures that we are going through so often.
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Tuesday, April 19, 2005 8:30 PM CDT
Per's chemo last weekend was a real experience.
Some of you know that we had a change which resulted in the chemo being given at the hospital and then we came home for the follow-up fluid and some meds for the next 18 hours or so. Per carried around a bag of fluid in a backpack during that time. It was a learning experience for us, and I think we wouldn't mind doing it that way again. It was less stressful for all of us, because we were able to be home with Audrey, eat our own food, and have less interrupted sleep from poking, prodding, and other forms of torture. Also, the chemo was started earlier in the day, and that meant some of the worst side effects had passed by bedtime.
Praises:
1) Chemo went very well
2) Per is running and jumping and really getting good reviews from his teachers and therapists
3) Green things are growing in our yard!
Prayer Requests:
1) the fluid on Per's leg doesn't seem to be changing, and we're wrestling a little with putting his wrap back on. Please pray that the fluid would GO AWAY.
2) Per's upcoming scans on May 5th and 6th to look for any potential new sites of tumor
3) That God would comfort the family of Major, another preschooler with Rhabdo who recently passed away.
Thank you for continuing to pray for us,
Kristen and Thor
Saturday, April 16, 2005 9:04 PM CDT
So, I guess the whole experience of finishing our chemo at home didn't go too badly.
The home nursing gal came over at 10:00 last night for the last Mesna, Ativan, and ... something else. Then we finished off our taxes and headed to bed.
It was just nice to be at home, to not have to hang around the hospital so endlessly, have our own video collection, and get free food from the refrigerator instead of the hospital cafeteria. Per was a little more nauseated than usual because of the med timing, but he slept better without so much poking, prodding, and vital-taking, and for us as a family it was superior in a lot of ways. It would have been even better if I had made him Drink-drink-drink in the car on the way to the hospital (and not left the DVD player plugged in the car all day!).
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Friday, April 15, 2005 9:47 PM CDT
We're home after a very long day, although we arrived at 8 a.m, the chemo didn't get started until 1 p.m, as Per wasn't hydrated well enough (unusual for him). Then we were finally discharged at 6 p.m, to find the car battery dead.... We got home about 8:30, and are doing pretty well.
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Thursday , April 14, 2005 9:29 PM CDT
We are now in possession of a backpack holding a HUGE 3 liter bag of fluid, lots of syringes, and a fancy pump to give Per the post-chemo fluid.
Grandma Julie, Per and I head out at 6 a.m. to get an early start on chemo, and I'm thinking we'll be at Children's for 4-6 hours.
Should be interesting!
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Thursday, April 14, 2005 4:24 PM CDT
It looks like chemo is going to be changed (again). But this time instead of rescheduling we're going to go down, get set up with a pump, and then come back HOME. Yikes! So, we'll see how that goes. Maybe it will be a good thing.
Kristen
Tuesday, April 12, 2005 12:50 AM CDT
Hello,
We are now in week 21 of Per's 42 week course of treatment. After this weekend, he will have only 6 overnight and 6 short chemo's left. Yea!
Per's hair continues to grow into a nice fuzz, but we still expect it to fall out soon, perhaps after this weekend.
We are having some very nice spring weather, and Per has been running, climbing, and driving his Gator truck all over the place. He's a little bit of a speed demon on that thing, but seems to enjoy his independence. He'll gladly take any small person for a ride!
The other piece of interesting news is that Per will have a repeat of all his scans on May 5 and 6. This is a routine follow-up, the scans are to look for any new cancer that might have developed since Per's last scans in January. We trust the Lord that Per is doing as well on the inside as he seems to be on the outside.
Praises:
1) SPRING!
2) moving through the halfway mark in Per's treatment
3) Audrey's tummy continues to feel well
Prayer Requests:
1) Per has a stuffy nose, and sometimes a cold can drive down his counts. If they're low, we won't be able to do chemo this weekend. Please pray that his blood counts would be good so we can get toward the finish line
2) For a smooth overnight chemo this weekend (that Mommy won't mess up Per's line again!)
Thanks,
Kristen (and Thor)
Tuesday, April 5, 2005 2:26 PM CDT
Hi all,
We are having a beautiful Spring day here in central Wisconsin, with temps in the upper 60's. I hope you are having an equally gorgeous day wherever you are!
It is a week and a half since Per had his overnight chemo. He did really well with the exception of his line infiltrating (the needle came out of his port enough to leak under his skin, creating a half-lemon sized lump), and then his crazy mother pulling his line out accidentally a few hours later. So, all in all he got stuck three times. Yuck.
Then, last week Thor and Audrey took Per down for a quick chemo, because I was out of town visiting friends (Hi Scott Family!) in Indianapolis. As expected, Per's counts were very low, but he didn't seem to be particularly symptomatic.
Per now has 7 "short" chemo's and 7 "long" chemo treatments left. Right now we are going every week, and then in Mid-May we'll go back to just every three weeks for a while.
Also, Per's hair continues to grow, so he probably has a good 1/2 to 3/4 inches of fuzz on the top of his head. It's very soft and cute!
I was reminded this week of just how well Per is doing, when I read of another girl with rhabdo in her throat who is hardly able to eat, has been receiving IV nutrition for months, and hasn't even been able to receive all of her medications because of the toxic effects. There are so many kids who get transfusions every time they get chemo and in-between as well.
Audrey lost her third tooth this last Sunday, conveniently timed for during our church small group meeting, so she had an audience. :) It's her first top tooth, and she looks so adorable with the big gap there.
Praises:
1) Per continues to do really well with his treatments
2) We have mostly been very healthy
3) SPRING!!!!!
4) Audrey is enjoying school and her attitude has been good
Prayer Requests:
1) That the fluid on Per's leg would be re-absorbed. There is little change in it, but at least no worse since we stopped wrapping his leg.
2) Continued protection from the toxic chemicals that Per receives each week
3) Please keep praying for Jason:
http://www3.caringbridge.org/tn/jasona/
Thanks for praying,
Kristen (and Thor)
Wednesday, March 30, 2005 8:04 PM CST
Just another 36 hours until Thor and the kids head to Milwaukee for another quick chemo. Per continues to hold on to the peach fuzz on the top of his head, and to behave like a normal little boy. It's such a blessing to us that he seems to feel well so much of the time.
Thunderstorms set in this afternoon, signs that a change in the weather is coming. Audrey and Mom went to a local art museum this week, where the main collection is of paperweights, and another collection of African-American quilts are on display. Try explaining to a child growing up with computers what a paperweight is needed for!
Anyway, Per didn't have problems eating after we got home on Saturday. He did really well, and we were blessed to get discharged around 1 o'clock, due to a new system they are instituting.
Thanks for your prayers,
Kristen
Monday, March 28, 2005 8:30 PM CST
Both kids were off of school today, and we had wonderful weather, up to 60 degrees!
Per is back to school tomorrow, and I'm sure all that sweet fuzz is going to fall off his head in the next few days. :(
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Saturday, March 26, 2005 6:08 PM CST
We're back at home now. We're so thankful to be done with the treatment and ready to enjoy Easter.
Kristen
Friday, March 25, 2005 6:20 PM CST
We are finally to our room, but happily Per received his chemo on the outpatient unit a few hours ago. That should make it much easier to get out of here earlier tomorrow!
And, the surgeon says, surprisingly enough, that we can just leave the wrap off of Per's leg. I'm amazed, but he says unless it gets really swollen again we can just let the fluid resorb on its own, over the next few months. I'm eager to give it a try!
Waiting for dinner...
Kristen
Tuesday, March 22, 2005 8:55 PM CST
Dear friends and family,
Chemo last week was canceled because of a bed shortage at the hospital. Although frustrating, it was a blessing to be home the whole day Saturday for Audrey's birthday. Thanks to all who sent cards to Audrey. She received over 40 cards, and was so thrilled to open each one, talk about who it was from, and we were able to remind her that each of you are praying for Per and for all of us. Thank you!
So, this Friday we try again for overnight chemo. It's not a classic Easter celebration, but I guess it's par for the course this year. Also, there is a cancer-sibling event at Children's on Friday, so it works out well for Audrey to come down with us.
My biggest concern right now is the fluid on Per's leg. It hasn't changed much over the last 6 weeks, and he's getting so tired of having his Ace wrap on. So, we're hoping to have the surgeon see him this Friday, and see if there is anything else we can do.
Praises:
1) Spring (weather) is coming!
2) We were able to spend Audrey's birthday at home
3) This weekend we get to celebrate the most important event in History.
Prayer Requests:
1) For wisdom about the fluid on Per's leg
2) For chemo this Friday to be uneventful
3) Thor is traveling again this week, please pray for his safety
Happy Easter!
Kristen
2 Cor 1:9-11
This happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.
NIV
Saturday, March 19, 2005 1:31 PM CST
Audrey's comment at breakfast, "All of us being here together is the best present I could get," was enough to make yesterday's delay worthwhile. The promised snow didn't come until late last night, in a quantity much less than feared, and the beautiful white blanket is definitely brightening our day!
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Friday, March 18, 2005 12:01 PM CST
They have asked us to reschedule, so we're set up for next Friday. It's just as well we're off the roads with bad weather rolling into our area.
It's still frustrating to delay chemo and prolong the treatment another week.
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Friday, March 18, 2005 10:21 AM CST
We got about half an hour down the road when Children's called to say they were short on beds and would have to call us later to say if a bed had opened up for Per.
Waiting ...
Tuesday, March 15, 2005 2:04 PM CST
The days are passing quickly until we return to chemo this Friday. We new it had to come, but the break has been nice. This will put us at week 18 out of 39 for Per's chemo treatments. I reviewed his "roadmap" last night, the schedule for his treatments, and if all proceeds smoothly we'll finish up our last treatment in the middle of August. Won't that be wonderful?
Also, it looks like we're supposed to have a set of scans at week 24, just to look at his leg again, and also another CT scan of his chest and bone scan. This is a routine part of his treatment protocol.
We have certainly enjoyed this break from treatment. Per has really done so well with his treatments we cannot complain at all. So many kids are re-hospitalized frequently with other infections, have problems with swallowing and nausea from radiation, and have much more surgical intervention than Per.
Praises:
1) Spring IS coming (even to Wisconsin)
2) Easter IS coming, (and with it Spring Break for the kids)
3) The skin on Per's leg is healing marvelously
4) Audrey is not complaining at all about her tummy!
Prayer Requests:
1) For this weekend's chemo, and protection for Per's body from the medication
2) For safety as Thor travels this week and next
Thank you to all who have sent Birthday cards and emails to Audrey. I know she's going to be thrilled.
Kristen and Thor
Sunday, March 13, 2005 9:52 PM
It's amazing how fast the skin is clearing up on Per's leg. It looks like a mild/moderate sunburn now and dramatically improving every day. We're still stuck with the wrap because of the pocket of fluid, however.
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Thurday, March 10, 2005 7:06 PM
The skin on Per's leg definitely seems to be improving. Yea! He's had a good week at school, too.
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Tuesday, March 8, 2005 9:50 AM CST
I can not tell you what a JOY it is to be home with all four of us, living "normal" days. The icing on the cake is not having any long drives to chemo this week. It is amazing.
One of the benefits of Per's diagnosis is that we have been made incredibly aware of the value of our days with him, and with Audrey. It's so easy to rush through life, waiting for vacation or a weekend to spend "quality" time with our children. I know we are more careful now about treasuring each hug and opportunity to share the experiences of life with them. I hope you are being reminded of this too, as you invest in your own relationships with family and friends.
As you know, we returned home last Wednesday, after our last day of radiation. On Thursday, I took Per to school for the first time in over a month. I was a little concerned that he might be afraid to be away from home, and from Mom and Dad. But, after I watched him nearly topple his teacher with a hug and run off to see his friends, that fear vanished.
Per's class is pretty funny. There are 5 other boys in the class, and all of them have speech and developmental problems to varying degrees. Apparently, Per is not aware that he is a member of the class, and tends to see himself as one of the teachers. The main recipient of this attention is Morgan, a little blondie with Down Syndrome. Poor Morgan can not do a thing on his own when Per is in the room, shepherding him around. So, I'm not sure if Morgan is glad for Per's return, but I was thrilled to see Per back at his old ways.
The skin on Per's thigh and bottom has started blistering a little. We were warned this might happen, and it doesn't seem to bother him too much. He actually only complains when the time comes to change the wrap on his leg, and the rest of the time he's distracted by being a little boy. We expect that the skin problems will start to improve (and go on improving) in the next few days.
For those of you who know Audrey, I'm hoping you will take a few moments to send her a birthday card, either through email at this address or to our home. If you don't know her, don't feel pressured. Her 7th birthday is coming up on the 19th of March, and I know she'd be thrilled to get some special treatment of her own. Our home address is 148 Kuettel Court, Neenah, WI 54956.
Praises:
1) We're home!
2) Another week and a half until chemo
3) Per's leg is probably at its worst, and will start getting better soon
4) Audrey's tummy continues be pain-free
Prayer requests:
1) For continued protection from infection for Per
2) That his skin would heal quickly and the pocket of fluid in his leg would go away
3) That we would continue to treasure each day we have with our children
Kristen (and Thor)
Psalms 23
The LORD is my shepherd;
I have everything I need.
He lets me rest in green meadows;
he leads me beside peaceful streams.
He renews my strength.
He guides me along right paths,
bringing honor to his name.
Even when I walk
through the dark valley of death,
I will not be afraid,
for you are close beside me.
Your rod and your staff
protect and comfort me.
NLT
1 Peter 1:6-9
In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith-of greater worth than gold, which perishes even though refined by fire-may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls.
Saturday, March 5, 2005 5:48 PM
Wow, it is such a blessing to just be at home, get things cleaned up, the laundry done, and sleep in our own beds. Now, if we could just get the kids to stay in bed past 6:30 a.m.!
Per's leg is getting a little worse, more irritated and a little open, but they warned us that could happen over the next week after finishing radiation. He doesn't seem TOO upset about it as long as he's distracted.... back to Walgreen's for skin care supplies!
**************************************
Wednesday, March 2, 2005 4:13 PM CST
We are so blessed that today was Per's last radiation treatment, and we have all returned home. Thor and Audrey joined us in Milwaukee yesterday afternoon so that Audrey could come along to watch the treatment this morning. And now it is OVER! We are thankful for the excellent nursing staff and radiation staff who took care of Per, but we pray we never see them again.
Now we have a 2 week break until our next chemo, on March 18.
Per's counts were very low yesterday, as expected, but he doesn't show any signs of it. I keep reminding him to "Slow down and save those platelets for something important!" but he won't hear of it. Would someone tell this kid that he's sick?
Per's thigh started getting red from the radiation in the middle of last week, but he hasn't developed any blistering. The doctor says it may get worse over the next week, but at least we don't have to worry about delaying any more treatment. Also, the fluid on his thigh has been going away very slowly, but now that radiation has ended this should improve as well.
Praises:
1) A nice break from treatment for the next 2 weeks
2) The END of radiation!
3) Per did not throw up even once after his last chemo!
Prayer requests:
1) Emotional and physical rest for all of us as we adjust to being home.
2) That the fluid on Per's leg would continue to go away. He hates wearing the ACE wrap.
3) For continued protection from infection
Thank you for all your prayers,
Kristen
Monday, February 28, 2005 3:55 PM
ONLY 2 RADIATION TREATMENTS LEFT!!!!
Saturday, February 26, 2005 11:37 AM CST
Thor and Per arrived home early Friday afternoon. What a blessing to have everyone together! Per's new hair growth has mostly fallen out since I last saw him :( , but he did not throw up at ALL since his chemo on Tuesday. That's so amazing!
Per has also developed a sunburn-like reaction to the radiation on his thigh. This isn't surprising, and we're glad that we only have to get through 3 more treatments, so we should be able to deal with it that long.
The other concern is that the fluid on his leg is really going away slowly. It's more of an irritation than a problem, because we have to keep the ACE wrap on, and that makes it hard to put the radiation cream on his thigh and bathe him. Yes, we can take it off for brief periods, but it's just the process of putting the cream on, letting it dry, replacing the wrap, and repeating that once or twice a day. Please pray that the fluid would go completely away so that we could stop the wrapping process altogether.
Otherwise, Per's spirits are good, he and Thor were very glad to be home and we are so thrilled that THERE ARE ONLY 3 RADIATION TREATMENTS LEFT!!!!!
Thank you for praying,
Kristen
Thursday, February 24, 2005 7:21 PM
Per had a fever and Thor took him to the ER. They didn't find a reason for the fever, and his counts were good, so they've returned to the RMH. Thank you LORD!
Thursday, February 24, 2005 1:09 PM
16 RADIATION TREATMENTS DONE! 4 MORE LEFT!!!! YEA!
Tuesday, February 22, 2005 12:43 AM CST
14 RADIATION TREATMENTS DONE! 6 MORE LEFT!!!
We are so glad to see the end of radiation quickly approaching. Per has been tolerating it really well with no skin problems or nausea so far. He was even excited when I dragged him out of bed at 5:30 Monday morning to hit the road with Thor, once he realized he could watch a movie in the car and that he'd get to stay at the Ronald McDonald House. When I was with him last week, he would much more easily sit on the "gurney" in the day surgery room and patiently watch his video and let the nurses do their thing. It's such a blessing for him to have a good attitude. Actually, my worst problem with him last week was leaving the RMH for home, when he threw himself down on the ground and wouldn't move.
Obviously, we made it home despite his objections, and Thor came home too, late on Saturday. YEA! Everyone is glad when Dad can be with us. God sent a beautiful snow to brighten the day on Sunday, and the kids had a great time out with Thor, shoveling and playing in the snow. We even have a little temporary pond in the backyard that we slid around on Saturday morning. I'm sure it will be a temporary mud pit in a month or so, but it's sure fun now!
Audrey and I are enjoying the start of our girl time this week, and looking forward to bonding over American Idol, getting our hair trimmed together, and reading and relaxing. This morning I was able to see her P.E. class perform the dances they have been practicing.
Thor and Per are preparing for chemo to start this afternoon and run overnight. They'll expect to get released Wednesday afternoon, and return to the RMH for the rest of the week. Then, they'll be home again on Friday afternoon.
Praises:
1. We are rapidly approaching the end of radiation
2. Thor is able to be with Per this week, so I can have girl-time with Audrey
3. No complications from the radiation
Prayer requests:
1. That today's chemo would go smoothly, the nights are usually long with lots of awakenings, at least for the parent. Please pray Thor would get some good sleep.
2. For continued protection for Per's body from the chemo and radiation, that they would kill only what they need to
3. That we can continue to trust God for strength and peace through the stress of these days
Thank you for your prayers and support,
Kristen (and Thor)
Monday, February 21, 2005 6:22 AM CST
The boys are off to radiation early this morning in the dark. Per was actually excited about getting to watch "Monsters Inc." while Daddy drove!
Which means, that I get Audrey ALL TO MYSELF (with Jessica's help) for the week! Tomorrow, her PE class is having a dance presentation, which she's very excited about. Time to bring out the video camera!
Per has chemo overnight starting tomorrow. Thor will be alone with him, so please pray that Thor will get some food and the occasional break.
Kristen
Friday, February 18, 2005 12:35 PM
We're back at home! 12 treatments down! 8 to go! YEA!
Tuesday, February 15, 2005 10:03 PM CST
We are now done with 9 of Per's 20 radiation treatments. Yea! Per's attitude and emotions surrounding going to the hospital, preparing for treatment, and the rest is really good. That's a blessing. However, each day he requires more medication to sedate him, so it's making things tricky for the anesthesiologist.
This evening, we had some additional excitement when we made a quick run to the ER after Per hit his forehead on a table here at the Ronald McDonald house. 3 hours and 2 stitches later, a very grumpy and worn out little boy climbed into bed, exhausted. Thankfully he didn't have any more serious injuries. Also, we found out that having a bald head from chemo got us whisked back to an exam room right away instead of sitting with the sneezing coughing people in the waiting room!
Per is also struggling with some diarrhea the last few days, and we are thankful for the availability of "pull-up" diapers to prevent any extra laundry.
Audrey's tummy is much better after a trip to the doctor last week, and she is having a fun week with Grandma Julie at home.
Thor is suffering in the 80 degree weather while working in Puerto Rico, and will probably need some encouragement when he returns to what's left of our Wisconsin winter!
Praises:
1) Per emotionally doing well with radiation
2) Audrey's tummy feeling better
3) Almost half-way done with radiation
Prayer requests:
1) Per's tummy and his stitches
2) Safe return home for Thor
3) Our return to chemo again next Tuesday.
Thanks for the prayers and support.
Kristen
Monday, February 14, 2005 4:28 PM CST
We are here, hiding out at the Ronald McDonald House. This morning was our 8th radiation treatment. Only 12 more to go!
The biggest issue right now is that Per keeps having diarrhea, and we're going through pull-ups like ... they're free!
Anyway, that's not a terrible problem, just an irritation.
Radiation is going well, and we're thankful for this facility.
Kristen
Thursday, February 10, 2005 7:47 PM
Per and Thor are home for the evening, although we have another treatment tomorrow. It's so good to all be here together!
Per's leg is doing well, and the fluid is staying away with his ACE wrap.
It's interesting, because Per's hair has recently grown back a little. We had about a 5 week break in chemo from just after Christmas until a week or so ago. In the interim, Per seemed to get very blond and fuzzy on top. But, in the 4 days since I've seen him, the hair is clearly coming in darker. The hair will probably fall out again next week, but it's fun to see!
6 radiation treatments down! 14 to go!!
Tuesday, February 8, 2005 1:22 PM CST
Hello!
We now have 4 of the expected 20 radiation treatments under our belt! Things are going smoothly, and Per's attitude seems to be pretty good. Actually, since Per and Thor are together at the Ronald McDonald House, they seem to be having TOO good of a time. :)
This week is kind of a nice change for me, too. Since the boys are gone, I pretty much have Audrey all to myself in the evenings. We haven't had more than a couple hours alone together in a few years, so it's nice to have more concentrated time. Audrey has been dealing with a lot of emotions recently as well, so I'm glad to take advantage of the opportunity to be with her.
Per isn't having any problems from the radiation, but we wouldn't expect to see any for a couple of weeks. The most common early complication would be skin irritation, which sometimes can force treatment to stop. The four week treatment may be short enough to avoid that.
The fluid on Per's leg has been resolving nicely, but the surgeon wants us to continue to keep the ACE wrap in place. It's frustrating for Per, because it limits his movement, but hopefully another week will be enough to clear up the problem.
Thor has an upcoming business trip, so Grandma Julie will be with Audrey next week, while I go back to Milwaukee with Per. Please pray for all of us during our separation.
Praises:
1) Fluid on Per's leg going away without any secondary problems
2) Per's bravery with the radiation equipment and strange faces
3) Safety for our many travels
Prayer requests:
1) Per's constipation is flaring somewhat again
2) That Audrey would feel secure and grow in trusting God during these days
3) Continued protection of Per's nerves, muscles and bone from the radiation
If you have any interest in praying for other kids with Rhabdomyosarcoma or in hearing their stories, I'm including some links you can explore:
Jason is an 18 year old who had a recent recurrence of his cancer and has decided not to pursue further chemo
http://www3.caringbridge.org/tn/jasona/
Cooper is a preschooler who is a little ahead of Per in his treatment course
http://www2.caringbridge.org/mi/cooper/
Stephanie is a 12 year old battling Rhabdo
http://www2.caringbridge.org/ar/stephanie/
I know their families would appreciate your prayers.
Thanks,
Kristen (and Thor)
Friday, February 4, 2005 1:43 PM CST
We are home, YEA!
Per is getting a much deserved nap, and I'm trying to put everything away, so we can pack up again Sunday evening.
Only 18 radiation treatments left to go!
Kristen
Friday, February 4, 2005 1:43 PM CST
We are home, YEA!
Per is getting a much deserved nap, and I'm trying to put everything away, so we can pack up again Sunday evening.
Only 18 radiation treatments left to go!
Kristen
Thursday, February 3, 2005 8:28 PM
Despite the fact that we were out of the hospital by 9 a.m. today (6:30 a.m. we had to be at Day Surgery), this ended up to be a busy day. We drove to Illinois to check in on a recovering Grandma Alice, and buddies Noah and Simon.
Radiation went really well this morning, we don't expect any complications until later on anyway. So, one more tomorrow morning, and then HOME for the weekend.
G'night!
Kristen
Wednesday, February 2, 2005 4:38 PM CST
We are now discharged from the hospital and camped out at the Ronald McDonald house. Per's surgeon said it will be okay for him to go ahead and start radiation in the morning, although we'll have to watch the fluid on his leg carefully for any signs of infection.
Per did not throw up ONCE so far, and we are about 24 hours out from when his chemo was given. He even ate a sandwich from Subway for a late lunch with a bunch of chips and some juice. What a blessing.
We are eager to go to the play room and for bedtime to arrive.
Kristen
Tuesday, February 1, 2005 6:38 PM CST
We are now two weeks out from surgery. Per is walking really well, and only limping a bit. Thor returned Per's walker yesterday, but we were glad for having those few days!
Now we are starting back in to chemo and for a short time we'll only have treatments every 3 weeks. In the middle of that, we are starting our 4 weeks of radiation. It's the shortest time possible, because all the tumor was able to be removed.
Right now, radiation may be delayed a bit because there is a pocket of fluid in the area of Per's surgery. This isn't unexpected, but it's a possible source of infection. Because of this, we may have to delay radiation a few days. In the meantime, Per will have an ACE wrap on his leg to compress that area.
Also this month Thor will be either traveling for work or away with Per for radiation, and Kristen will be away 2 weeks with Per for radiation as well. It's going to be a challenging time as our family is spread in many directions.
Praises:
1) Negative margins on the tissue removed
2) Good healing of Per's leg
3) The encouragement of friends and family
Prayer Requests:
1) That the pocket of fluid would go away without getting infected
2) That Per's bones, skin, and nerves on his leg would be protected from damage
3) The coming month of travel and separation for our family
Thanks,
Thor and Kristen
2 Chron 16:9
For the eyes of the LORD range throughout the earth to strengthen those whose hearts are fully committed to him. (NIV)
Sunday, January 30, 2005 6:38 PM CST
I don't think Per has used his walker at all today! He has crawled a few times, but mostly he's walking alone, with only a little bit of a limp. He's not running, but he did give a little jump earlier on. So that's really reassuring.
We're starting to gear up for this week. Per will go to school tomorrow (one last time!), and then Tuesday we're off for chemo, which will go overnight into Wednesday morning.
Wednesday a.m. we have another radiation modeling session, and hope to stay at the Ronald McDonald house that night if there are rooms available. Then Thursday and Friday morning we'll have radiation treatments.
Thor will be traveling, and Audrey gets to shack up with Grandma Julie until we return. Please pray that Audrey will be able to enjoy her time with Grandma without worrying about us.
Keep up the prayers, we're going into a crazy month!
Kristen
Friday, January 28, 2005 12:50 AM CST
Per continues to improve every day. He in enjoying using his walker, and his legs seem to work better all of the time.
This morning we went to visit a friend in the hospital after dropping Audrey off at school. We parked "near" the wrong entrance, and ended up spending 15 minutes walking through the halls to get to the right elevator. Of course, that was because one of us was walking at a snail's pace, and then was distracted by the machinery outside the window! At any rate, the point is that he kept walking and walking, with his walker, and didn't wear out. On the way back to the car, he did accept a ride in a wheelchair (saving us about 10 minutes)!
Then, we went to the library, where he tore around using the walker, collecting books. It's amazing to me how naturally he uses it, how he limps less as he is walking with it.
Anyway, after that we went to visit Audrey at school. While we were waiting in the hall for her to come out of class so we could eat lunch together, he walked across the hall with the walker, left it there, and turned around and walked back to me on his own. It was probably only about 10 feet, but it was exciting because he wanted to show me he could do it, and because he walked with just a little limp and didn't look at all as if he was going to fall.
So, I'm personally thrilled with his progress, with his growing independence and desire to return to walking.
Eating hot lunch with the 1st grade crowd is pretty interesting. There is non-stop talking, and I think EVERY kid starts with their dessert! I had to hold back on lecturing Audrey to wait on dessert, because after all I'm only going to be monitoring her once in a while, and I'm certain she already knows how I feel about it!
Thor is coming home tonight, and I am looking forward to some relaxing weekend time together.
Kristen
Wednesday, January 26, 2005 8:46 PM
We had kind of a fun development today. This morning, Per came all the way to the basement to find me at about 6 a.m. That meant he crawled across the bedroom floor, down the stairs, through the hallway, down the stairs again, and across the basement. Cute as that was (and determined!) I was frustrated that he doesn't seem to be putting work into walking like I thought he would. So, this afternoon, we went to physical therapy and got him fitted for a walker.
And he loves it! He loves being so independent! It is awesome.
Tuesday, January 25, 2005 12:25 AM CST
We're now a week out from Per's surgery, and looking forward to the next big phase of Per's treatment, radiation.
Per has started taking a few steps all on his own, can walk 20-30 feet with assistance, and can crawl around and go up and down the stairs pretty independently. He is still complaining of occasional pain in his leg, but mostly it seems to be ITCHING! I'm sure it's bothering him, but a little itching never did much harm.
Our pathology report showed that some tumor cells were alive in what the doctor removed, but the edges of what was removed were cancer free (negative margins). That is awesome, and means that we'll only need about 20 radiation treatments (4 weeks).
This morning, we had a "modeling session" where they made marks on Per and did another CT scan of his leg to figure out exactly where the radiation should be aimed. All went smoothly, and we'll have another practice session next Wednesday, before starting radiation on Thursday for real.
Also, next Tuesday we'll get admitted for overnight chemo, then have a 3 week break before any further chemo. During our radiation treatments, Per and either Thor or I will plan to stay at the Ronald McDonald house in Milwaukee, to minimize stress, traveling, and weather concerns.
We are so thankful for the outpouring of support from our church family, coworkers, family and friends during these past few months. We are so blessed by all the support and encouragement you have given us, and know that we can never repay you. It is a reminder to our family of all Christ has done for us that can never be repaid.
Praises:
1) The support of friends like you
2) Continuing recovery from surgery
3) An excellent surgical result
Prayer requests:
1) Peace that we are in God's hands
2) That both kids would feel loved and secure
3) For continued healing of Per's leg, that he would be able to be more independent with walking
Thank you,
Thor and Kristen
Monday, January 24, 2005 12:46 AM CST
Well, Per was able to go to Sunday school (with Dad along) and to school this morning (with Jessica). He enjoyed being at Sunday school, and I'm looking forward to hearing about regular school! I'm sure it was good for him to get out of the house, and do things with his friends.
Tonight Per, Grandma and I head down to Milwaukee again. Per will have a "dry run" of his radiation early tomorrow morning. Apparently, that means that they re-scan his leg in the CT, make marks on his skin, and get all the information they'll need to plan the radiation.
Then, next Wednesday we have another practice run, and the fun begins the next day!
I'm fighting a bit of a cold, so I'd like a restful night!
Oh, Per is moving more and more, although he's sore quite a bit, after being so active. This morning I came out of the bathroom to find him crawling across my bedroom floor. I was glad he wasn't just laying in his bed crying, but it was a little strange! Also, last night we found him laying on his right side in bed, a good sign that the pain is getting less and he's moving himself around in bed as much as he needs to.
More tomorrow!
Kristen
Saturday, January 22, 2005 8:43 PM
Well, Per certainly put some mileage on today. This morning we had a ton of new snow, so we bundled up and dragged Per around the cul-de-sac once, in the blowing snow. It was great to be outside.
Then, we worked with him on sliding down the stairs on his bottom, and crawling/walking up the stairs. He did a little walking alone, leaning on the wall, and lots more, held up with lots of support, mostly from Dad.
After all that, Per was fairly sore in the afternoon, but it's encouraging to see him make progress!
We're probably going to take Per to Sunday School tomorrow morning, for the first time in 3 1/2 months. It seems like a good time, since we have 10 days or so until our next chemo treatment!
Counting our blessings ...
Friday, January 21, 2005 2:32 PM
I love being home! I love that my son can sleep in his own bed in a dark room without someone taking his blood pressure every 2 minutes! I love that I don't have to ASK for Per's pain medication! I love not having to take a 10 minute walk just to get some lunch!
Per is moving a LITTLE more.
This morning, he sat on the couch watching TV a little, and started to slip back into his TV-vegetative state. So, we turned it off, and I laid him in the middle of the family room floor, on his back. I put a piece of cake and his cup of juice about 4 feet away. That kid would NOT move! He didn't even have to get up, he could have just ROLLED! But he would NOT! I finally put him back on the couch and sat at the other end, eating the cake, but he wouldn't even LEAN toward me!
Then, Grandma Julie stopped by, and Per's teacher, and cousins Emmi and Simon, and suddenly, he's shifting off the couch to kneel at what passes for a coffee table at our house! And throwing his weight around a little. He even crawled a few feet. We were amazed.
Then, the crowd leaves, and he's back to paralyzed Per, lurching over to one side like he can't even sit up! It's going to be slow going, goofy kid!
Thursday, January 20, 2005 7:33 PM CST
We are home! Unfortunately, I wasn't able to get any updates out to our prayer email list while we were in surgery.
Per did very well in surgery. The whole procedure lasted about 2 hours, and thankfully the surgeon did not have to remove the covering of Per's sciatic nerve. This will help to protect the nerve as Per goes into radiation.
The first night was difficult, Per had trouble urinating, and was running a temperature, probably just from the anesthetic wearing off, but wasn't in much pain. He really seems fairly comfortable when he's sitting still, but gets mad very quickly with any sort of movement.
The first day after surgery, Per took a couple of steps with MAJOR assistance from Thor, and really put no weight on his foot. Today he was able to do a bit more, still with a lot of assistance, but becoming a bit more mobile adjusting himself in bed.
We expect him to do very well once the muscle spasms decrease, and we're all just looking forward to a good night's rest.
Next week, we will return to Milwaukee to have a "dry run" of Per's radiation, and we are expecting the real thing to start just after his next overnight chemo, about the 2nd and 3rd of February. This is sooner than we expected, but it will be good to get it started and then finished.
We won't know what the pathologist has to say about the tumor removal until next week, but feel confident that all the tumor will have been removed.
Thank you all for your prayers, we are blessed to have you on our team.
Kristen and Thor
Thursday, January 20, 2005 9:21 AM
Per had a much better night. He has been able to go to the bathroom on his own since yesterday morning, and ate pretty well for breakfast today. The drain from his leg isn't putting out much fluid, so we may be able to pull it this evening, or possibly tomorrow morning.
He has been taking a few steps, with plenty of help from dad (holding him up by his hands) and encouragement from the physical therapists! Most likely, once the pain begins to subside and he's not so afraid, he'll be able to do more on his own.
We're eager to get back home, to our own beds and surroundings (and Audrey!), and hope that will happen quickly!
Wednesday, January 19, 2005 9:45 AM
Well, the night was certainly long, but I think altogether we got enough sleep. Per hasn't been able to urinate on his own yet, and was pretty upset when the physical therapist came to get him moving this morning. But he is starting to eat and joking around a little.
So, for today our tasks are to get more food into him, get him to urinate on his own so we don't need a catheter left in, and get up and about a little.
Audrey is having a great time with Grandma Julie, and looking forward to enjoying some new snow we got yesterday!
Kristen
Tuesday, January 18, 2005 4:33 PM
We are out of surgery and up to our room. Thankfully, we were placed on the Heme/Onc floor, where we are used to being, and the facilities are very accomadating to long term stays.
Per's doctor said that surgery went well, and the covering of Per's sciatic nerve did not have to be removed. This will provide more protection for the nerve when Per has radiation.
Per doesn't seem to be terribly uncomfortable, and is drinking some.
We are so happy to be done with this phase of Per's treatment. Thank you for praying for us today (and always).
Kristen
Monday, January 17, 2005 9:02 PM
Dear friends and prayer partners,
We are preparing physically and mentally to make the trip to Milwaukee Tuesday morning. We are both excited and nervous to have surgery. It is the next trip in Per's journey, but also a very big step for our little boy.
Some specifics:
Surgery is scheduled for 10:30 a.m., and expected to take less than 3 hours.
We are expecting to be in the hospital 2-4 days.
The surgery will remove a wide margin around Per's tumor
We are thankful for:
1) The support of our family and friends
2) Your many prayers
3) The peace that God promises to give when we trust in Him in every situation
Please pray for:
1) Safety and protection for Per
2) Wisdom and guidance for the surgeon
3) Sleep for loving parents
4) Audrey to have an enjoyable time with Grandma Julie while we are gone
Thank you for your prayers,
Kristen
Matthew 7:7 Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.
Philippians 4:6 Do not be anxious about anything, but in everything, by prayer and petition, with Thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Friday, January 14, 2005 4:49 PM CST
Please check the last journal entry for Per's scan results.
Our visit with the surgeon today went well. Our surgery time got moved up to 10:30 a.m., which will be easier for us. Also the surgeon said we will probably stay at the hospital for 2 to 4 days, depending on Per's healing, and he wants Per to wear a knee immobilizer for 2 weeks after surgery to protect the incision site, which will extend from his knee to his bottom. The total amount of muscle that will be removed seems huge! But, we know that God is protecting Per, and it's best to remove all the tumor rather than leave any behind.
It looks like we can expect chemo to resume and radiation to start 3 weeks or so after surgery.
I think that's all for now.
Kristen
Tuesday, January 11, 2005 8:02 PM CST
Dear friends and prayer partners,
As the days draw nearer for Per's surgery, we have certainly received a lot of good news.
1) Per's MRI shows an 88 percent shrinkage of his tumor, and the tumor is not touching the sciatic nerve, even though it is close.
2) His Bone scan is negative for any signs of spread
3) His Chest x-ray and Chest CT are both normal
We are looking forward to meeting with the surgeon sometime Friday after chemo, and still expecting to go to the operating room next Tuesday.
These are all blessings from the Lord, and a result of your many prayers for us. Thank you all.
Praises:
1) Our oncology team was flexible with us, allowing us to have our MRI locally when we had to reschedule, and limiting us to one trip to Milwaukee and back with Per in tow this week.
2) After this Friday's treatment, we will have a short break from chemo while Per heals from surgery
3) AWESOME results from Per's scans
Prayer Requests:
1) God's guidance for the surgical planning and the surgeon's hands
2) For Audrey to have peace as we are gone next week for surgery, she has been complaining of her stomach hurting again this week.
3) A cure for our precious little boy.
Thank you,
Kristen and Thor
Monday, January 10, 2005 7:48 PM CST
We got home from the MRI just about 7 p.m. But, at least IT'S DONE! We couldn't tell much from glancing at the pictures before Thor hit the road, and probably won't know about what the results mean before we meet with the surgeon this Friday.
I'll try to call tomorrow for the results of last week's scans.
Please pray for Audrey. She came home from school with an upset stomach today, and of course felt fine once she was here. I assume it's just nerves, so please pray that we'll have wisdom how best to respond.
Good night!
Kristen
Friday, January 7, 2005 8:52 PM CST
Some quick updates:
Last evening, Jessica, Per and I went to Milwaukee and stayed overnight to be fully prepared for today. The night was very long, Per was awake numerous times crying and tossed and turned constantly.
This morning, we went to Children's checked in and got Per's Bone scan, CT scan, and Chest x-ray done. He was completely sedated, and woke up extremely grumpy, crying the whole way home.
The coming schedule is this:
Monday afternoon, MRI locally at Theda Clark.
Wednesday, in our absence, the tumor board will review Per's case and his films and decide on the best plan.
Friday morning weekly chemo and consultation with the orthopedic surgeon.
We are still expecting surgery on the 18th.
Thank you for all of your prayers. It is a blessing for us to have the MRI rescheduled locally and end up with only 1 trip to Milwaukee next week, instead of a potential three or four.
Kristen
Thursday, January 6, 2005 5:07 PM CST
The MRI will not get done today, and we're still waiting on scheduling information. It must be done prior to surgery, so that timing is crucial.
We will still go for the bone scan and CT tomorrow. These don't have to be done before surgery, but they are important in the follow-up of his cancer treatment and must be done eventually anyway.
It's so frustrating to have these minor setbacks, but we know that God's is aware of what we are dealing with, and that he has a plan for all that happens.
Kristen
Thursday, January 6, 2005 12:19 AM CST
Unfortunately, Per ate some yogurt for breakfast this morning, and the MRI has to be rescheduled. We were hopeful they would allow us to have it scheduled for this afternoon, but it is not going to happen.
Right now, we are waiting to hear when it will get scheduled. The MRI is the most important scan to prepare for surgery. We still have the other scans for tomorrow, just to check for any spread of the cancer.
Please pray that:
1) The MRI will get scheduled in a timely manner that does not require any more missed work for either of us.
2) Surgery will not get delayed.
3) We will have patience with the hospital.
Kristen
Thursday, January 6, 2005 6:24 AM CST
Per and Thor arrived quickly in Milwaukee last night (Thank you Lord!) and got to their hotel. I'm sure they are up and getting ready for the hospital now.
Please pray for the sedation and scans. And a safe return tonight so we can head down again in the morning.
Kristen
Wednesday, January 5, 2005 7:25 PM CST
Thor decided to head to Milwaukee tonight, to make certain that they can get through the impending snowstorm and make the first set of scans tomorrow.
Drive Safely!
Kristen
Tuesday, January 4, 2005 2:55 PM CST
Well there are only two days until Per goes for his scans. We are excited and nervous to see the results. His schedule is:
Thursday
8:00 a.m. Lab draw
8:30 MRI of Per's leg
9:30 Chemo
Friday
8:00 a.m. Pre-bone scan injection
8:30 Chest x-ray
10:00 bone scan
11:00 CT of abdomen
Next Monday, the 10th, we will meet with the surgeon to discuss his plan.
Per's 4th birthday is the 11th, and we are expecting surgery on the 18th.
The scans are intended to help the surgeon prepare for removal of any remaining tumor and to show any possible spread that would need to receive radiation at the same time as Per's leg.
Please pray with us that Per's sedation for the scans would go smoothly, and that the tumor would be gone altogether or at least safely away from the major nerve in Per's leg. The surgeon will try to preserve this nerve, even if it means leaving part of the tumor behind, but that will mean a longer course of radiation.
It is almost impossible to feel anything in the area of Per's cancer, because it has shrunk so much, so we are very hopeful at this time.
Praises:
1) Per is feeling well and getting over his cold
2) We are finally reaching our scans and surgery
3) For finding a good treatment for Per's nausea with his last major chemo
Requests:
1) Safe journeys back and forth to Milwaukee many times in the upcoming weeks
2) That the scans would show the miracle God is working in Per's body
3) For Per's surgeon and other physicians to have wisdom about his treatment
Thanks,
Kristen and Thor
Sunday, January 2, 2005 6:00 PM CST
Only 4 days until Per's scans!
Here's our schedule:
Thursday
8:30 a.m. MRI of Per's leg
9:30 Lab/Chemo
Friday
8:00 a.m. Pre-bone scan injection
8:30 Chest x-ray
10:00 bone scan
11:00 CT of abdomen
The scans are intended to help the surgeon prepare for removal of any remaining tumor and to show any possible spread that would need to receive radiation at the same time as Per's leg.
Please pray with us that Per's sedation for the scans would go smoothly, and that the tumor would be gone altogether or at least safely away from the major nerve in Per's leg. The surgeon will try to preserve this nerve, even if it means leaving part of the tumor behind, but that will mean a longer course of radiation.
It is almost impossible to feel anything in the area of Per's cancer, because it has shrunk so much, so we are very hopeful at this time.
Thanks,
Kristen
Friday, December 31, 2004 2:14 PM CST
Happy New Year (almost)!
We had a few episodes of vomitting before we left the hospital on Wednesday, but not nearly as bad as it has been in the past. And then no vomitting (from Per) since we got home. A wonderful blessing. It's great to make some progress in the treatment of his nausea. Today he has received a few doses of medicine for nausea, but hopefully tomorrow he won't need any.
It was a balmy 45 degrees here last night, and our snow is all melted. Audrey keeps asking if winter is over ... Just wait and see, little girl!
The Christmas decorations are coming down, and we are looking forward to starting 2005. Per's birthday arrives in 12 short days (January 11th), and Thor's right after that. Yea!
Time to go vacuum up tree needles,
Kristen
Wednesday, December 29, 2004 12:39 AM CST
Wow, what a night! Amazingly enough (thank you, Lord), Per did not throw up once. I will trade a wet bed for vomit on my clothing ANY TIME. He was so sedated and drugged we could hardly wake him up to potty overnight, but he even was able to eat a couple of pancakes, scrambled eggs, and some yogurt for breakfast.
The downside is that the doctor working this week is forcing us to stay for the whole 24 hours of post-chemo fluids, which means we can't depart until 6 tonight, but that way he'll get the big dose of nausea meds just prior to leaving, which worked really well last time.
Another positive is that I got a LOT of sleep last night, even if it was interuppted. Thor managed to finish "Finding Nemo" on the GameBoy (you'd better ask him about the priorities on that) :-)
We also found out this morning that I was wrong in assuming we won't have any more chemo for 3 weeks. It won't be the last time I'm wrong, if you're keeping track. There will be the quick chemo for the next two weeks, but then we have a break at surgery time, and this is the last "bad" chemo before surgery. And, next week's chemo can be timed with Per's scans, so that's good.
So, our prayer requests:
Praises:
1) NO VOMITTING SO FAR!!! and a semi-restful night for Kristen and Per
2) Audrey was able to experience the Ronald McDonald House, and spend quality time with Aunt Andrea
3) Did I mention no vomitting so far? Yea!
Prayer requests:
1) Preparations for Per's scans and surgery
2) A Restful week for Kristen and the kids off of school and work
3) That we can depend on the Lord for the comfort and strength we can't give each other.
Thanks,
Kristen and Thor
Wednesday, December 29, 2004 0:49 AM CST
Per's chemo finally got started about 7 p.m. last night. So, now we can be THANKFUL for the days when it starts at 4 p.m.! And the new medication that we tried for nausea has worked so far, but also made him sleep through certain other bodily functions (leading Mom to the shower at 12:15 a.m.). But, it is very good that he's not vomitting so far.
We had a nice visit from Mom's cousins and are thankful for a room very close to the nursing station, so all beeps get answered very quickly. And Audrey and Aunt Andrea are sleeping it out at the Ronald McDonald house ... Can't wait to hear how that went.
Please pray that we'll get out of here at a reasonable hour tomorrow. Ooops. Today.
Kristen
Monday, December 27, 2004 5:17 PM CST
Per's labs look great! So it's off to chemo tomorrow morning.
Then NO CHEMO at ALL for two weeks! Although we'll have plenty to do with scans and surgery, so don't worry that boredom will set in.
Also, Per has developed the sniffles. Please pray that they'll subside enough to minimally affect our hospital stay.
Kristen
Monday, December 27, 2004 8:15 AM CST
Well, I hope your Christmas weekend was as crazy, busy, and fun as ours!
Today is our day to go for pre-chemo blood work. Per has a little sniffly nose, but otherwise is doing well.
And, if all turns out okay with blood tests, we'll be down to Milwaukee tomorrow for chemo. We have some new theories for treating the nausea that hits Per so badly at bedtime and always seems to run the whole night.
Then, one more week until his scans!
Kristen
Tuesday, December 21, 2004 12:51 AM CST
As we are busily getting ready for opening presents and visiting family it's easy to get wrapped up in the emotion of the Christmas season. What an amazing gift God has given to us. What an example of compassion and love as we head into another year.
Last week's chemo was the fastest ever! We left late (oops!) for the hospital, and then we were only at the hospital about 45 minutes, allowing us to get home in plenty of time for afternoon nap time for Per. It was great! Also, Per was so well behaved during his shot, we didn't even have to restrain his arms, and he only whimpered a little bit. He is getting so used to the routine of weighing, measuring, even lets the nurse take an oral temp instead of under his arm. He loves to rush over to check out if the helicopter is on it's pad or not, and look at all the decorations. It's so nice to not have to fight him for every little thing.
And now, we still have one more week until next Tuesday's overnight treatment. What a nice break. We just need to stay healthy and get through Christmas!
Praises:
1) The coming break from work and school for Kristen and kids
2) Thor has a few weeks before he has to travel again
3) Per's adjustment to the routine of treatment
Prayer requests:
1) Continued health through the next treatment, so that scans and surgery don't get postponed
2) That we could enjoy Christmas and have family harmony
3) That the chemo would continue to do its job
May you have a wonderful celebration of Christ's birth and God's generous gift to us all,
Kristen and Thor
Sunday, December 19, 2004 11:30 PM CST
It is so nice having this break from chemo. We don't go back to Children's (barring any emergencies) until the 28th. Yea! That's over a week away. How amazing!
And the other blessing is that Per really isn't getting any medicines at home this week. That's a major relief.
We are somewhat stressed getting ready for Christmas, but that's not unique to us.
Please continue to pray for our family as a whole. We really need God's strength to get through these days.
Thank you for your prayers.
Kristen
Sunday, December 19, 2004 11:30 PM CST
It is so nice having this break from chemo. We don't go back to Children's (barring any emergencies) until the 28th. Yea! That's over a week away. How amazing!
And the other blessing is that Per really isn't getting any medicines at home this week. That's a major relief.
We are somewhat stressed getting ready for Christmas, but that's not unique to us.
Please continue to pray for our family as a whole. We really need God's strength to get through these days.
Thank you for your prayers.
Kristen
Thursday, December 16, 2004 9:38 PM CST
After an exciting night watching Audrey's school Christmas program ... we are getting ready for our weekly trip to Children's tomorrow.
Per has been doing well, and getting less combative about taking his medications.
I just realized yesterday that we are about 1/4 of the way through chemo! If we continue on the path that leads us to the beginning of August next year as expected, we have finished 1/4 of the journey. It's amazing to think of it that way, and to see how far we've come.
And how blessed we are.
Kristen
2 Cor 12:9-10
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.
Tuesday, December 14, 2004 3:11 PM CST
It seems like we live in "cancer world" where things are always changing, and nothing is predictable.
First, Per's scans have been moved to the 6th and 7th of January, so that we can see the full tumor shrinkage from his fourth overnight/VAC treatment. I am starting to feel that the VAC treatment is what really does the work, and the in between vincristine treatments are just holding the cancer at bay until we can get to the good stuff again.
Also, his next overnight chemo is now scheduled for Tuesday the 28th of December, and surgery is still scheduled for the 18th of January.
Third, this week we were also informed that Per's tumor is not the less aggressive embryonal type of Rhabdo we were expecting, but the more aggressive alveolar. This is discouraging, because it was one of the small positives we were holding on to, but it doesn't change Per's treatment. There are plenty of kids with Alveolar Rhabdo who are cured, and we'll keep looking to that goal.
Since hearing that, I have learned through my Rhabdo email list that some kids have their sub-type changed even this late into treatment, because the biopsies are reviewed very carefully by the Children's Oncology Group, who monitors all studies on children with cancer. This is reassuring, because it means they are working very hard to make sure we get the right treatment.
This past weekend, we were also concerned that Per might be developing some nerve symptoms that they've been warning us about, specifically dragging his foot, but this seems to have passed, and might have been made worse by being physically exhausted.
Also, Per has developed thrush in his mouth. This requires one more medication to be given to him three times a day, which is so much FUN!!!!
As you can tell, there are lots of big things coming up for us, and some ongoing challenges. We were so glad to be able to participate in the "Flight to the North Pole." The kids had a great time, and it was a terrific opportunity to be around other families of kids with cancer and encourage each other.
Praises:
1) A terrific weekend with the kids in Milwaukee
2) Getting prepared to celebrate Christmas with our families
3) Per continues to eat pretty well, and we are getting the medications into him like we should
Prayer requests:
1) That the toxic effects of the chemo would only harm the cancer cells, and not Per's nerves, bone marrow, or stomach.
2) For Per's upcoming scans and surgery, that the surgeon would have wisdom and skill
3) That Per's mouth would heal up quickly and he would continue to be free from other infections.
4) That we can continue to trust God's plan for our family
We pray your Christmas preparations are joyful,
Kristen and Thor
Saturday, December 11, 2004 8:48 PM CST
Well, you know how I hate to write anything discouraging, but I do want to be honest about our prayer requests.
Per’s counts were pretty good when we went for chemo yesterday. That was a positive, but while we were there, we realized that he has thrush, or a yeast infection, in his mouth. This is probably caused by a combination of the weekly antibiotics he gets and the fact that his immune system is being held back. It’s discouraging to think that other nasty bugs are also fighting to get past his immune system. Also, it makes another medicine that he has to take 3 times a day, for 10 days, and it’s just really difficult to do that.
Also, the oncologist told us (11 weeks into treatment) that the final pathology report shows Per’s rhabdo is not the less-offensive embroyonal subtype, but alveolar. This probably doesn’t change much for us. God already knew what type of cancer Per has, and the chemo will be the same, because the thigh location is already a “worse” site. However, it’s hard to hear any scary news.
The other wearisome thing is seeing Per struggling with walking today. One of the side effects of the chemo he receives every week is nerve irritation/injury, and that can cause his foot to drag. We’ve never noticed it happening to him before, but today he did seem very clumsy and fell a couple of times while walking. Per isn’t the world’s most coordinated kid, but this was different. And in the car he was complaining of one of his hands hurting and his foot as well.
These are all reminders of the seriousness of Per’s cancer and its treatment. We are feeling pretty stressed out right now, and greatly appreciate your continued prayers for us.
There were a couple of encouraging things. Per had a great time at the Christmas party in Milwaukee. We weren’t even sure he could grasp the Santa concept, but he was thrilled! He even consented to sit on Santa’s lap. He also had a great time at the water park in Milwaukee the night before. (Yes, we hate the idea of pushing Santa on our kids, but it was FUN!)
We were able to meet another family from Wisconsin whose son has Rhabdo, as well. We pray we can be an encouragement to them as they face their own son’s illness, even though they are farther into the journey than we are.
Please keep praying as we strive to trust God for each day.
Kristen
2 Cor 4:7-9
But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.
2 Cor 4:18
So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.
Thursday, December 9, 2004 11:08 AM CST
Happy Thursday! We're looking forward to going to chemo tomorrow with Audrey along for the experience.
When I pointed out to the nurse practitioner how convenient it would be for Per to have his chemo right before his scans, we suddenly ended up with a change in schedule!
Because Per got delayed in treatment at Thanksgiving, they want to have more time for the fourth VAC treatment to work before they do the scans. So, they will most likely be rescheduled for the 6th and 7th of January.
It certainly makes sense to leave that space, but would have been nice the other way around, too!
Per has been eating like a crazy man. Yesterday morning, he woke up at 6:15 a.m. and joined me on the couch with a "Lunchable," which seems to be his meal of choice recently. I don't know what the appeal is, but I'll keep buying them if he'll keep eating! When I was putting cold cuts in Audrey's lunch today, he wanted some of those too. Pretty entertaining. And, the other night he was eating broccoli like it was going out of style. Hopefully that will balance out the processed meat! It's so nice to see him really hungry.
Kristen
Eph 2:10
For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.
NIV
Tuesday, December 7, 2004 9:21 AM CST
Our overnight chemo this past weekend was challenging, as expected. Per was again very sick overnight, and started to improve as the sun came up. We were able to go home a little earlier in the day on Saturday, so that was nice. Then, he felt very good on Sunday, and just a little sick on Monday, keeping him from school. We’ve continued to be fairly aggressive with his nausea meds and that seems to make a difference for him.
Audrey had a great time at her friend’s birthday party, and was thrilled to have gone.
This weekend, we have a short chemo again, but then we’ll be staying overnight in Milwaukee for a Christmas party for kids with cancer and their families this Saturday. That should be a real treat for Per and Audrey.
Last weekend, we learned that Per’s follow-up scans have been scheduled for the 29th and 30th of December. These scans are intended to help Per’s surgeon plan for surgery to remove the tumor, which is expected on the 18th of January. They are hoping to remove as much of the tumor as possible without injuring the major nerve to his leg. And the amount of tumor that is left behind will determine how much radiation he’ll be receiving, starting at the end of January.
We’re really excited to see what the new measurements of the tumor are and to finally get the “bump” OUT of our son. It’s a major step in his treatment.
Praises:
1) Per is feeling well and really eating well
2) Audrey had a good weekend with her friends
3) Surgery and scans are scheduled
Prayer Requests:
1) Guidance for Per’s surgeon and oncologists as they review his scans
2) Safe travel again this weekend
3) Per’s continued protection from illness
Thank you,
Kristen and Thor
Sunday, December 5, 2004 10:21 AM CST
We arrived home yesterday afternoon, and overall Per has been doing better than the previous treatment. He actually drank quite well last night and tried to eat a little, too.
Yesterday, we found out that Per's repeat scans will be the 29th and 30th of this month. We will probably have an overnight chemo earlier in the week, so it will add up to a big stay in Milwaukee, but thankfully Mom and Audrey don't have responsibilities that week!
Also, his surgery to remove what remains of the tumor is scheduled for the 18th of January.
I can't believe all those things are coming up so quickly.
Please pray for the logistics of attending those appointments. We are thankful that the scheduling has worked out as it is, and that Per is starting to feel better already from this weekend's chemo.
Kristen
Saturday, December 4, 2004 1:23 PM CST
We're getting ready to head home, yea!
It's so nice when Per finally starts to feel better.
Kristen
Friday, December 3, 2004 2:16 PM CST
I guess patience is the name of the game on the chemo unit! Arriving at 10:00, we got to our regular room just after 11:00. Yea! We might get started quickly and be able to get home at a reasonable time tomorrow?
Well, no chemo yet, and the major anti-nausea drugs (usually 1 hour before chemo) are yet to be given.
Waiting...
Kristen
Thursday, December 2, 2004 6:37 AM CST
Per's counts were fine yesterday afternoon, so ... unless anything else pops up we're off to chemo tomorrow!
Kristen
Check out Per's school picture in the photo album!
Tuesday, November 30, 2004 12:29 AM CST
The past week has been a challenging one.
As you know, we were unable to go to chemo last Friday, as Per’s counts were too low. It was a little shocking to us that almost 3 weeks after his last overnight chemo he could still be at risk of catching a serious infection. But, we know it is better to go into one of the “big” chemo treatments fully prepared physically.
Last night, Per had a high fever. This is the first time this has happened to him since his diagnosis. We had to take him to the ER for testing and antibiotics, an episode that lasted over 4 hours. But, thankfully we were able to return home, and Per felt much better this morning. The cause of the fever is unknown, and he is otherwise acting well. We hope this means he is adequately fighting off whatever was causing the fever.
We are expecting again this Friday to have the overnight chemo treatment in Milwaukee. Audrey will be remaining behind so that she can attend a friend’s birthday party on Saturday.
Praises:
1)That we were able to return home and Per is feeling well
2)For opportunities to celebrate Thanksgiving with our family
3)For a weekend with no chemo and no long trip to Milwaukee!
Prayer Requests:
1)For better control of Per’s nausea when we have chemo this weekend
2)For safe traveling
3)That Audrey would enjoy her time with friends
Thank you,
Kristen and Thor
Monday, November 29, 2004 5:36 AM CST
Per had a little bit of a fever last night, but it seemed to be going down as we were off to bed. Hopefully it will be gone when he wakes up, and he can go to school. He didn't have any new symptoms last evening, but is probably fighting something "normal" off.
Yesterday we went to get our Christmas tree, yea! The kids had a great time, and Carrie, Brandon, Emmi, and Simon came along with us. And even though it was freezing we still had to get icecream! We are true cheeseheads.
It was wonderful to get back to church again yesterday and be encouraged. Carrie was good enough to stay with Per in the morning so we could attend.
Hope you have a wonderful week.
Kristen
Friday, November 26, 2004 4:16 PM CST
We hope everyone had a terrific Thanksgiving!
We are so thankful for our blessings and every day that we have together as a family. Thank you for being a blessing and an encouragement to us as well.
Per has been doing pretty well, not the world's greatest appetite, but playful and having a good attitude.
We have been encouraged by stories from other parents whose children have the same kind of cancer and have had long delays in treatment, but have been successful anyway.
Shop carefully!
Kristen
Wednesday, November 24, 2004 1:12 PM CST
We have just been informed that Per's counts are too low to go ahead with chemo this weekend.
While we want to do what is best for him, it is disappointing to have to delay treatment, and will force us to rearrange other scheduled plans. It will also push back his expected surgery and other overnight chemo treatments.
It's very frustrating to have an upset in stability when you are holding on to small positives, but we know that God has his hands on Per.
Please pray for us all.
Kristen
Tuesday, November 23, 2004 8:23 AM CST
Dear friends and family,
Last week’s chemo was again uneventful. It was a blessing to have the distraction of friends along for the ride, and Per enjoyed showing them around the chemo unit. He was still pretty upset when the time came for his injection, but that didn’t last long.
Per’s belly pain has been coming and going. It never lasts for long, and is a little better since we’ve increased his constipation meds. He isn’t complaining as often as before about neck pain and vague things like that. We’re very thankful for those improvements.
Also, his tumor continues to shrink, and we’re looking forward to the re-scans he’ll have in a month or so to see just how small it has gotten.
This Friday, if a bed is available on the chemo floor, we’ll make the journey once again. Then, there will be only one big treatment left before Christmas! If there isn’t a bed available, we’ll just take it day by day until we can get in. Also, there will be blood tests for Per tomorrow morning, to make sure it’s okay to go to chemo.
Audrey will be with us the whole time this weekend (She and Kristen will stay overnight at the Ronald McDonald House), and we are eager for her to understand all that really goes on at the hospital. Her jealousy has been so much better recently, thanks to some well-timed recognition from church friends and an organization called “Super-Sibs.” And she has been more interested in seeing how she can help her brother.
Praises:
1) Audrey's attitude and communication have continued to improve
2) Thor is home with us!
3) Per is tolerating his chemo well, and God has protected him from the typical illnesses this time of year.
Prayer requests:
1) This weekend’s “big” chemo, and that Per would have as little nausea as possible
2) For continued effectiveness of the chemo against all cancer cells
3) For family harmony as we go through this weekend.
Have a wonderful Thanksgiving,
Kristen and Thor
Friday, November 19, 2004 2:28 PM CST
Well, we have made it home through the gray and rainy day from today's chemo. Per did pretty well, and is now down for a nap (I think!).
His counts were okay, and he was excited to show his friends around a bit on the oncology floor.
We didn't get a lot of insight into the fatigue, but were glad to be able to say Per's belly pain is all but gone (he complained once early this morning).
Looking at the future, we are planning on returning next Friday, if there is a bed available on the chemo floor. We will have Audrey with us, so she can understand all that goes on there at a regular overnight chemo. And, we're starting to plan for Per's repeat scans of his leg in late December, early January, in preparation for Surgery in early January.
Other good news... After his surgery, we'll get a week or two off from chemo, and then for a couple of months we'll only have treatments every three weeks! Maybe we can pretend to be normal people (with a bald kid)!
Kristen
Friday, November 19, 2004 2:28 PM CST
Well, we have made it home through the gray and rainy day from today's chemo. Per did pretty well, and is now down for a nap (I think!).
His counts were okay, and he was excited to show his friends around a bit on the oncology floor.
We didn't get a lot of insight into the fatigue, but were glad to be able to say Per's belly pain is all but gone (he complained once early this morning).
Looking at the future, we are planning on returning next Friday, if there is a bed available on the chemo floor. We will have Audrey with us, so she can understand all that goes on there at a regular overnight chemo. And, we're starting to plan for Per's repeat scans of his leg in late December, early January, in preparation for Surgery in early January.
Other good news... After his surgery, we'll get a week or two off from chemo, and then for a couple of months we'll only have treatments every three weeks! Maybe we can pretend to be normal people (with a bald kid)!
Kristen
Thursday, November 18, 2004 1:07 PM CST
Well, with a slight increase in Per's constipation meds, the belly pain seems to be gone. That is wonderful.
The other thing on my mind right now is that Per has been sleeping more and more. He was already a big sleeper, and up to a month ago we had considered stopping his nap, so that he could go to bed more easily at night. However, now he is sleeping in most mornings, taking a 3-4 hour nap in the afternoon, and the off to bed a few hours later. He is moderately anemic, but we'll have to ask the doctor tomorrow about it.
On the brighter side, we have company coming for the weekend, with plenty of friends to distract Per during the long drive to the hospital and home tomorrow. Yea!
Kristen
Monday, November 15, 2004 6:11 PM CST
Today, Per had his blood counts repeated. Thankfully, it was just a finger stick, and he was very easy going about having it done. His ANC is back up to 2500, and his platelets are more normal, too. So, tomorrow he can return to school, and we don't have to give any more nightly injections, most likely until his next "big" chemo. Yea!
My phone call to inquire about Per's belly pain wasn't as fruitful as we would have liked. They recommended getting an x-ray of Per's abdomen to see if he is constipated from the Vincristine, as that's a common side effect. It's my opinion that he'd be more distressed by having the x-ray than he is by the pain. Also, the treatment would just be to increase his constipation meds, and we can do that anyway, without the x-ray.
Also, Vincristine can cause abdominal pain for no specific reason. So.... since the treatment is either narcotic pain medication (which can worsen constipation) or the meds he's already taking. Since he's really not THAT distressed, we're just going to wait for his appointment on Friday.
Thank you for all your prayers and encouragement.
Kristen
Sunday, November 14, 2004 10:30 PM CST
Per has been complaining on and off of his stomach bothering him. For those of you who know Per, he doesn't have a lot of "words" so what happens is he points at his stomach and says "full" or "hurt," and then he makes a yucky face.
Most of the time, he'll just keep going with whatever he's doing and not comment much about it. It doesn't seem to slow him down much, and it doesn't seem to improve if we give him meds for nausea. So, I guess I'll be calling the doctor tomorrow to get an opinion.
His appetite doesn't seem to be the greatest, but on the other hand he's not losing any weight, so I'm trying not to worry about it too much.
Saturday, November 13, 2004 9:03 AM CST
Per and Thor had a quick and safe journey to Milwaukee yesterday. Per hasn't lost any weight at all (a little surprising) and is getting better at having his blood pressure, weight, and other measurements taken.
He did get very anxious when they were "accessing his port" which means sticking a big needle into the hunk of plastic under the skin of his chest that allows medicines to go directly into the biggest veins and right back to the heart. But, I think any one of us would feel that way!
Also, Per's counts came back very low, with ANC (bacteria fighting cells) of 70. For those of us not on chemo, our ANC is probably 5000-10000. His platelet (clotting) counts are pretty low as well (114 for my medical friends), and he is getting a little more anemic all of the time.
It amazed me, again, when I was given those results, because he really isn't acting sick. He's not having problems with bleeding, isn't acting particularly tired, and hasn't gotten sick. We're so thankful that God is sustaining him right now.
Kristen
Friday, November 12, 2004 7:52 AM CST
Thor and Per are off to Children's for just a quick chemo treatment, then home this afternoon.
We're praying for safe, quick travels, and for Per's counts to be good.
Thank you for your prayers. It's so awesome that even with all the travel and everything, Per hasn't had a cold in over 3 weeks, which can be quite an issue this time of year.
Kristen
Thursday, November 11, 2004 1:03 PM CST
Thor and Per are off tomorrow to weekly chemo! Hopefully they'll have a good male bonding session and we pray for safe traveling.
I get to be the "ready reader" for Audrey's classroom tomorrow afternoon, so that should be exciting!
Today Per had his school pictures scheduled. It was so nice we didn't have to worry about how his hair would be! (I'll be surprised if he actually sat still for a picture taken by a stranger)
Kristen
Wednesday, November 10, 2004 1:15 PM CST
Had a wonderful dinner of strawberry pancakes last night, and I'm glad I made a triple batch, because Per was definitely excited!
I hope this doesn't turn into a staple of his diet, but it was fun to see him eager to eat.
Tuesday, November 9, 2004 9:53 AM CST
Yesterday went a little better for Per. He did stay home from school, and I think ate a fair amount of food. In the evening, he didn't eat much, and even threw away his "push-up" icecream thing. So, I continued to give him his nausea meds, but I think maybe it's more of a bad taste in his mouth or just appetite loss more than nausea.
This morning he did eat a little, but when the bus came, he rushed out... and refused to stay on the bus. :(
So, I drove him to school and snuck off. I'm sure he'll do fine, but the separation thing is pretty scary for him right now.
As each day passes, I know he'll feel better, and the in-between chemo treatments aren't bad at all.
Kristen
Monday, November 8, 2004 10:00 AM CST
Per ended up vomitting just once Sunday, in the evening. And he really never ate very much. So, today he's home from school, and can hopefully go back tomorrow. Overall, he doesn't seem to be in pain, and has pretty good spirits. He is a little anxious, same as usual, about Mom and Dad coming and going, so it's great that Jessica, our babysitter, can be at home with him.
Yea Jessica!
Audrey and Thor had a great weekend in Indianapolis. I think Audrey is getting TOO used to riding in first class, since Daddy usually gets bumped up there (frequent flyer perk)! And, it was difficult for her to get off to school this morning.
Keep praying for the kids' anxiety levels and that we can show them how to trust God on a moment-by-moment basis.
Kristen
Sunday, November 7, 2004 11:15 AM CST
Per has now made it 24 hours without vomitting! Yea! He hasn't eaten that much, but he's taking in a little. I actually woke him up in the middle of the night to take nausea meds, not wanting to change sheets in the morning and end up behind the curve on nausea. So, I think that was a good idea.
Of course, we're watching an embarrassing number of videos (thank you to the public library!), and yesterday I think we watched the "Bob the Builder LIVE" DVD 3 or 4 times. :) But we are just taking it easy, and anything that doesn't involve vomitting is good.
Back to Bear in the Big Blue House...
Kristen
Saturday, November 6, 2004 7:02 PM CST
Well, we finally made it home, leaving the hospital around 4:30 p.m. Per didn't start eating anything until about 2 p.m, and his food of choice? Half my bag of Fritos and a bag of pretzels. I'm sure the nurses were horrified, but it was the only thing that interested him.
Then, he still didn't drink anything until we got into the car, where he put down a little water and apple juice, but let the fries I offered slip to the floor. So, he'll get a double serving of nausea meds now, and hopefully we'll make it through until morning.
Thankful for my own bed and no beeping i.v.s,
Kristen
p.s. if you want to see my funny hospital story, look at the previous journal entry.
Friday, November 5, 2005 11:45 p.m. (added late)
Funny story, do not read on if you don’t want to hear about bodily fluids: I finally coaxed Per to bed about 7:30 tonight, and sleep set in at about 8:30.
Thankfully, I watched him sleep while I stared at the walls. Around 9:15, his i.v. started beeping, and knowing he was due for medication, I thought I’d also take the opportunity to have him go to the bathroom, because he’s getting so much i.v. fluid, and just had some Lasix as well.
Because of the chemo, Per’s urine is considered highly toxic, and we’re supposed to wear gloves to protect ourselves from it. I thought the fastest way around this hassle was the completely hands-off use of the urinal, which also circumvents transporting the i.v. pole to the bathroom. Great idea, Mom!
So, I coaxed him to stand up, placed the urinal, and told him to go ahead. Suddenly, urine comes splashing at my face, hair, all my clothes! Searching through the dark for the reason, I finally realized that I had failed to remove the lid! So, a quick bladder empty turned into… Mommy shrieking, nurse panicking about toxic bodily fluids everywhere, shower for Mommy and quick bath for Per, Housekeeping coming to wash our floor, fresh sheets for the bed that MIGHT have been splashed, and poor sleepy Per getting a little more freaked out.
Of course, we had to call Thor and tell him the story of Mom’s goofiness right away! And the benefit: we have now changed into our last set of clothing and won’t have to change again in the morning!
I have long been convinced that our most important moments as parents, the moments when we are truly irreplaceable, are times like these. A child that can not help itself change sheets, bathe, get needed medicine longs for its parents. No matter how independent and stubborn they are when it’s time to eat green beans or clean up toys, they want only to be your child at the moment of their greatest distress. And it is a wonderful blessing to be the person who can serve them at that moment. I remember Audrey’s Cubbie/AWANA leader saying how close we are to emulating Christ as he washed the disciples feet, when we help a child in need. Even if it’s just wiping a runny nose, or putting on their shoes. We lower ourselves to the level of a servant. And it’s a incredible reminder of how Jesus wants us to live.
Per threw up in the middle of typing that story, probably just to prove my point. And now, it’s 1:30 a.m., I’ve watched the helicopter leave and return twice, wondering who it is going to rescue, and praying for their protection. I’ve called for the nurse about 10 times, for beeping i.v.’s and various other things. And I’m very thankful I don’t have to drive home tomorrow, because Grandma can do that, and that I still have a bag of peanut M&M’s if I get any more stressed!
Saturday, November 6, 2004 7:17 AM CST
A long and exhausting night. Per still isn't able to keep anything down, and had to receive lasix twice last night because his urine was very concentrated. I'm praying he will be able to eat some so we can go home today.
Friday, November 5, 2004 5:17 PM CST
We finally had chemo started at about 4 p.m., after arriving here at 10 a.m.! I don't suppose it matters, because we're here all night anyway. Grandma's friend was kind enough to bring us all cheesecake for snacking, just as the dietician walked in to talk to us. :) Perfect timing.
Per is feeling pretty well, and we're getting ready for dinner and fighting the chronic entanglement of i.v. tubing that is a million feet long around 3 year old feet that want to keep moving.
Hopefully we will be heading home by noon tomorrow, for a non-stressed weekend of relaxing around the house.
Praying for a restful night for us all,
Kristen
Thursday, November 4, 2004 2:36 PM CST
Per's labwork looks great, as far as I can tell. He's getting a little anemic, but nothing too worrisome yet. So I don't think there should be any delays for chemo tomorrow.
Praise the Lord.
Kristen
Wednesday, November 3, 2004 6:58 PM CST
Wednesday, November 3, 2004 6:58 PM CST
It's Wednesday evening, and the kids are getting ready for bed. I'm getting a little nervous about our trip to Children's this Friday. It will be the more toxic VAC cocktail of Vincristine, Adriamycin, and Cytoxan again this time. That happens every 3 weeks. Last time, Per threw up off and on for about 3 days. We weren't as agressive with the nausea meds as we could have been, because it was all so new to us, but I'm still nervous it could be worse this time.
All in all, we know we are blessed. Per has had no other complaints to speak of since that last treatment. The in-between treatments haven't had any side effects for him, his constipation is well-controlled right now, and his attitude is great.
I'm hoping this webpage will be a good way to keep people updated. Feel free to bookmark it and check back whenever you like.
Please keep praying for our family!
Praises:
1. Per doesn't miss his hair at all, and a slippery scalp makes it easier to get shirts off and on over his big head.
2. Audrey is really excited about going to Indianapolis with Daddy this weekend.
3. We have so much support from family, friends, and coworkers.
Prayer requests:
1. For safety in travel this weekend.... Kristen, Per and Grandma Julie to Milwaukee, and Thor and Audrey on the plane to Indiana.
2. For Per's bloodwork to come out okay tomorrow so that we can procede with treatment on Friday.
3. For the chemo to continue working. I swear that tumor is getting a lot smaller all of the time!
Thanks,
Kristen
Wednesday, November 3, 2004 6:58 PM CST
It's Wednesday evening, and the kids are getting ready for bed. I'm getting a little nervous about our trip to Children's this Friday. It will be the more toxic VAC cocktail of Vincristine, Adriamycin, and Cytoxan again this time. That happens every 3 weeks. Last time, Per threw up off and on for about 3 days. We weren't as agressive with the nausea meds as we could have been, because it was all so new to us, but I'm still nervous it could be worse this time.
All in all, we know we are blessed. Per has had no other complaints to speak of since that last treatment. The in-between treatments haven't had any side effects for him, his constipation is well-controlled right now, and his attitude is great.
I'm hoping this webpage will be a good way to keep people updated. Feel free to bookmark it and check back whenever you like.
Please keep praying for our family!
Praises:
1. Per doesn't miss his hair at all, and a slippery scalp makes it easier to get shirts off and on over his big head.
2. Audrey is really excited about going to Indianapolis with Daddy this weekend.
3. We have so much support from family, friends, and coworkers.
Prayer requests:
1. For safety in travel this weekend.... Kristen, Per and Grandma Julie to Milwaukee, and Thor and Audrey on the plane to Indiana.
2. For Per's bloodwork to come out okay tomorrow so that we can procede with treatment on Friday.
3. For the chemo to continue working. I swear that tumor is getting a lot smaller all of the time!
Thanks,
Kristen
Wednesday, November 3, 2004 5:30 PM CST
Per was diagnosed with Embryonal Rhabdomyosarcoma in early October 2004. We are receiving treatment at Children's Hospital of Wisconsin in Miwaukee.
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----End of History----
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