Clear Scans

Clear scans today! Thanks for your prayers.

Update

Today, Becky took Jordan in for a scheduled appt. concerning his kidney function and the understanding was that things were holding up. We are going to continue to monitor his kidney, but at this point no surgery or significant procedure will need to be done. Tomorrow, Jordan (Friday) has his scan check and we are grateful for the continued prayers. Merry Christmas and enjoy the snow!

Only Sadness

I have tried to come up with something to write for the last couple weeks, but am without words, only sadness. As many of you know, Ben's cancer has returned and it has been very aggressive and is now incurable. Jordan's friend Jenna and her family also received news that her cancer has returned. They are without treatment options, as well. We are heartsick and devastated for them both. These days seem so clouded with pain and fear. Please pray for some peace for these families. It is beyond difficult as they are called to make the best of their time with their children, yet suffering so deeply.

I say NO! to all this stuff...

So much for staying out the hospital. Jordan had a kidney infection this past week and ended up being admitted for 2 days, then came home only to get sick again. He is doing fine now, but the week has knocked us down again. He goes in for some more testing this week to make sure his right kidney/ureter is working ok. We are very much wanting to avoid another surgery. Jordan's comment to being in the ER again was, "I say no to all this stuff!" I keep saying no to all this stuff too, but it seems to go on an on.

Home

Jordan made leaps and bounds the last day and checked off the long list of things the doctor listed for him to go home. So they gave us approval to leave last night. He is doing really well now. We have some tubes and extra things to deal with for the next week or so, and then hopefully life will return to normal

Thursday

Sorry we haven't updated so far. It has been a difficult week. Jordan didn't really start feeling better until today. He has been feeling really sick and not himself. He has barely spoken to Brent or I, but had a turnaround when his little friend Jenna came to visit today. He was so happy to see her. He wanted her to sit in the bed with him, so she climbed up and he made sure she could see the Wiggles show. He proceeded to chatter away to her with a smile. It was the best thing that's happened all week. They have both been through a lot and have a special little friendship.

He will probably need to stay for a couple, maybe a few, more days. It has been hard to be back in the hospital again. We are hoping it is the last time ever. I felt like we spent our summer trying to distance ourselves from the hospital and medical care, and I really, really did not want to come back. But I did forget the one good thing about our experience, and it has been very good to see all of Jordan's friends from the hospital again as they have come to visit and show how much they care about him.

We'll keep you posted and then hope we will be signing off for awhile and returning to an ordinary, but very appreciated normal life.

Surgery

Jordan is out of surgery and doing fine. It went a little longer than expected, but the surgeon was hopeful that he repaired the damage from the scarring. It is likely we will be here a few more days.

Good News

Jordan's scans were clear today and we are very happy. Thanks for your prayers. We check in Sunday for surgery on Monday and will likely be there a few days.

Surgery and Scans

I hope some of you could listen to that song. It is so beautiful and written and inspired by some of those closest to us during this whole ordeal. It captures my emotions completely. Jordan has a final surgery to correct some scarring coming up in 1 1/2 weeks as well as scans. I am trying to give thanks for each day but admit that I am losing many to fear lately with all that coming up. I keep telling myself that as best as anyone knows, Jordan no longer has cancer, and each day I give in to fear is a day I miss cherishing his sweet little life. It threatens to pull me under, though. I will have to find a way to give thanks for each day. It is the only way not to lose them to fear.

The surgery in Sept. 15th and the scans are Sept. 12th

Song Link

Here's the link to the song that Brian wrote about Jordan if you want to listen to it ( I don't know how to actually make it link, so you'll have to copy it.

http://www.ilike.com/artist/Brian+Coon/track/One+Day+More

Camp

Greetings from Black Butte, Oregon. We got here yesterday from Side by Side camp (a camp sponsored by UPC for families with a child with cancer). We had an amazing time at camp. The kids had "buddies" that were incredible. Each got their own personal counselor to do whatever they wanted during the day. Jordan would ask every morning "where'd my buddy go?", then we'd go find him, they would spend hours on the slide and at the Tully's cart getting cups full of whip cream, and playing in the golf cart. The other kids had a fantastic time as well. They could barely slow down to talk to me, there were so many exciting things they had to do. It was nice for Brent and I to get some time to relax and watch the kids having such a fun time. Last year was a good time, but Jordan was doing iv antibiotics and things were very stressful for our family. So much has happened since then, it seems like an eternity ago. We are so thankful to those that provided such a great week for our family. It couldn't have been better. I think maybe this summer is doing good things for me. Life away from cancer treatment seems to good to be true. I bought wine at Costco yesterday and the checker asked me if I was 21. Now that is very funny. I laughed about that for several minutes. Anyways, we're back next Saturday. Hope you are all having a nice summer!

A Good Week

The best and most amazing news...

Ben's scans were clear. Please see their blog www.caringbridge.org/visit/towne.

To add to the week, they started taking apart our deck. A crane arrives tomorrow to move it to the other side of the house. The kids can't wait to see that!

We leave for Side by Side camp on Sunday. A lot has happened since this time last year.

Party Pics

Well, I've been holding out on party pictures knowing there are some still out there to compile, but thought I would post a few. My biggest selection was from Tate's camera that included lots of pictures of food and his friends making crazy faces. So anyways here's what I could come up with. I think for some (Jordan especially) the bubblegum was the biggest hit. It seems so long ago, but a night we will never forget.

Our summer is going well. A friend asked the other day if I felt like I was just moving on. I told her it depended on the day. There are days that we forget all about cancer and delight in the moment and other days that fear seems to overwhelm me. Hopefully those days will fade away soon. We are incredibly blessed to have a summer full of vacations. So far we have hit Metaline Falls and Spokane, Virginia Beach and are headed to Mason Lake this weekend. Next week is Side by Side camp, then Black Butte and Port Townsend. And also next week, our "extreme home makeover" starts thanks to an unbelievably generous gift. It all seems unreal.

On a little side note, I ran 5 1/2 miles on Monday with my friend Jennie. I haven't done that in 11 years! Just a little bragging moment. Hopefully all the Kidd Valley onion rings will melt away soon.

Best Summer wishes to all of you!

The Extremes of Life

We are in Virginia Beach visiting my sister and brother-in-law and are having an amazing time. The extremes of life are really something. Yesterday while Jordan played on the beach enjoying his snacks, I swam with the dolphins. Really! I swam out and was 10 feet away from a mother and baby who played in circles around me. Can we really be here? 6 months ago Jordan couldn't eat anything and sat in a hospital bed with 9 tubes in him while we worried and agonized. Today we spent 5 hours basking in the sun enjoying the beach and family. I am extremely overjoyed to be here, but also am heavy hearted for those who are still in the opposite extreme. I'm not sure what to do with all that in my mind and heart except be thankful for today.

Song

We had our good friends the Coons to dinner tonight. Brian played a song he wrote about our experience with Jordan. It was absolutely beautiful. I really struggle to leave behind the whys and the fear and thank God for just today, but I'm learning that it is the only way to live.

One Day More
B. Coon 2008


Who does know just what tomorrow brings?
Sunny skies? Pouring rain?
I’ve been toiling in this God-forsaken storm.
Some things gained. Much more lost.

Do you believe in miracles?
I believe I need one now.
When all the planets line up single file.
Come what may I’ll try to find a way to pray:

I will thank you, my Lord, for one day more.
I will thank you, my Lord, for one day more. (2x)

How does God dole out his lucky charms?
Some will win. Others not.
One thing I ask you Lord is “Why? O, why? O, why?” Please, tell me why.

Yes, I believe in miracles
And I desperately need one now
So line up, planets, line up single file
Come what may I’ve got to find a way to pray:

I will thank you, my Lord, for one day more.
I will thank you, my Lord, for one day more. (2x)

Frozen by fear, for those I hold dear, white knuckles hold them near
Lord, you can give and, Lord, you can take away
So I will give thanks for this day

I will thank you, my Lord, for one day more.
I will thank you, my Lord, for one day more. (2x)





Still getting party pictures together. Will post them soon.

Party!

We had a super fun time at the party. Thank you everyone for coming! Jordan's highlights were the bubblegum, jellybeans, hokey pokey, watching his dad do the Cha Cha Slide and all his friends being there. Thank you Wayne and Cathy, Kenny and Cathy, Carmen, Brian and Liz, Eric, Andrew, Lisa, Amy and Jason, and everyone else who contributed to make it such a memorable event. Our camera is broken and so we are having to rely on the photography skills of our friends. We would really appreciate any pictures taken that night.
We'll post them as soon as we can.

No Tubes

Some pictures of a great day at the beach!! Please notice: No Tubes!!
If you are coming to the party, could you let me know on the blog, email (brent_busby@yahoo.com), or in person. No big deal if you don't rsvp and come anyways, just trying to get a general idea. Thanks.

Celebration Time!

You are all invited to a party to celebrate and praise God for Jordan's life. It will be at our church, Calvary Fellowship (23302 56th Ave. West, Mountlake Terrace, 98043) on Saturday June 21st from 6:00-9:00 pm in the YAC/Fireside rooms. Bring your dancing shoes and get ready to see Jordan cut some rug. He's got some moves even better than Brent! A light dinner will be served.

We have been overwhelmed by the support from you all. There are many of you out there we don't even know who have encouraged and prayed for us. We would love to meet you, please come!

The Beginning of the Beginning

Thank you everyone for all your kind wishes and prayers. It is the Beginning of the Beginning for us of life without cancer treatment. We will never be the same, and as I have so desperately longed to be on the "other side," we have seen too much suffering and know too many people we care about perservering with this disease, to be able to completely move on.

Jordan has many physical scars and lifelong medical issues to deal with. I have emotional scars that feel like they will take a very long time to heal. But, we emerge with a deep love, admiration, and respect for our son. We have a stronger marriage and I have an even greater knowledge that I have a very amazing husband. We have an appreciation and joy in our children that will never leave us. And, we have a testimony about the Family of God and how they have carried us through this trial. For those things we will always be grateful. Give your children a kiss in honor of Jordan and expect details of a blowout party in the near future! We love you.


P.S. No more tubes!! The NG tube and his line came out yesterday too. Pictures to come!

June 5th

We got great news today! Jordan's scans were clear. It has been a long day, and we are all very excited and tired. We are very thankful to God that his life has been spared. More to follow soon...

Tomorrow

Tomorrow is the last day of chemo for Jordan. The drug he gets takes only a few minutes to administer, but we will be there for a good part of the day for all the other necessities that accompany getting it. Many people have been wishing us well asking if we are excited. I really am not trying to be rude, I just can't talk about it or celebrate till we get good news on Thursday after all his scans. Please continue to pray for Jordan. My anxiety level is high, but Brent as always is calm.

Jordan is doing well. He is continuing to eat. It is a very unusual diet. I am trying to balance nutrition with just getting in lots of calories. Some favorites this week include spearmint altoids, chocolate chips, super spicy ethiopian food, chicken broth, turkey, smarties, milk, and McDonald's icecream cones. My goal is for him to get the tube out in a week. We'll keep you posted.

Personal Chef

I have become a personal chef these days. Jordan has started eating again! He eats a few bites of something and then is on to the next. Yesterday he had cereal, pancakes, oranges, bananas, juice, coffee (mostly half and half), chocolate chips, sparkling water, and cheese and that was just for breakfast. We are so happy that he is eating, I'll make just about anything. We were thinking it was going to take a while to get the feeding tube out, but now maybe not. Before he would ask for things, look at it and then say..."don't want it, mama you eat it, eat it, eat it, eat it," and then shove it in my mouth. Chemo starts on Tuesday, so we are really hoping he keeps it up.

The other news, after all my nagging and planning, is that the final chemo day is June 3rd, with all his tests and scans on the 5th. That will be the end of his oncology treatment if everything looks good, which they expect it to. Please pray.

Some Comic Relief

Here is Jordan using Sitara's watermelon lipgloss for deodorant



Getting into the goggles and bandaids

This Week

This has been a tough week. The stress and sadness of all that is going on in the lives of those families around us has been weighing heavily on me. It is impossible to not become involved in the lives of the other families whose kids have cancer. Early on, I had guarded my heart against getting to know them, but sweet children draw you in and you can't help but suffer with them. As we anxiously head towards the end of treatment, I am exhausted with this evil disease. I am far past ready to be done with it, for Jordan and for everyone.

Happy Mother's Day

I occasionally think about Sitara's biological mother and know she must wonder how Sitara is doing. What is her family like? Is she loved? Is she being well cared for? One of the most difficult things about Jordan being sick is how I have had to turn over so much of my mother responsibilities to others. However, I have never once wondered whether they were being well cared for or loved, because I have had a star lineup of family and friends standing in for me. I couldn't have asked for a more amazing, nurturing, loving, fun, incredible group of women to do my job as mom for the last year and a half. They have done everything from driving them all over town to activities, countless overnighters, staying up with them when they are sick, feeding them, playing game after game with Sitara, tutoring, field trips, counseling, and loving them. I don't know what I would have done without them. It has been hard on our whole family, but Tate, Luke, and Sitara have thrived and I can only attribute that to our stand-in moms. So a huge "Happy Mother's Day" to my Mom, Cheryl, Julie, Liz, Amy, Maggie, Val, Jennie, Kate, and Kathleen. You are the best!

Nearing the Finish

Jordan starts his second to last chemo tomorrow. So far we are on schedule for finishing on June 3rd. At the end of last August when Jordan was originally supposed to be finished, we had all kinds of things planned to commemorate the end of treatment. The week we found out his tumor was growing was the most tramatic, painful, and devastating week of my life. Worse than his original diagnosis. Not only would Jordan have to endure six plus more months of hell, all of our celebrations,trips, school plans were immediately cancelled. So, it is with terrifying optimism that June 3rd approaches. We are hoping and praying for a big celebration party with all of you sometime in June.

Cousin Ben

We were extremely saddened to learn this week that cousin Ben's scans came back with cancer in his bone marrow. As we have spent the last 8 months with them, as Jordan and Ben receive treatment, there have been many hours in hospital rooms, clinics, surgery, heartache and tears and we are feeling their desperation as they must continue on this journey. They begin an experimental treatment next week. Please pray fervently for it to work. We love you Townes.

Their blog is caringbridge.org/visit/towne.

Why Play With Toys When You Can Unwrap Butter?

That's Jordan unwrapping the butter. He's mostly back to himself after being sick all week. His current past times are getting out whatever kind of food he can and making as big of a mess as he can before discovered, throwing things down the stairs, writing on the furniture, crumpling up homework assignments, and opening the packages of expensive medical supplies.

Chemo starts on Thursday. That's a little earlier and puts us on schedule to be done on June 3rd. Please pray that it is so.

Round 5

It's hard for me to write the next entry and move past the Palm Desert pictures. I sat in the freezing rain at Luke's soccer game wishing we were back. Jordan finished his 5th round of this newer chemo and did really well with it. He currently has a cough that is keeping us all up at night and hasn't been too happy the last couple days, but the chemo didn't seem to bother him much at all. This is why I put out a proposal to our nurse practitioner, to bump up the next 3 rounds so we get to the end sooner. The chemo doesn't seem to bother him as much as all the other things that surround it. My current plan puts him finished on June 3rd. I'm sure I'm driving everyone at the clinic crazy since we have been doing this so long, and I think I can be kind of a know-it-all. I've given up my PT job to become an oncology nurse, just no degree. Hopefully soon, I'll just be a mom.

Golfcarts and Waterslides

We're back and had a great time. It was around 80 degrees the whole time. Jordan had so much fun. His highlights were going in the golf cart with Papa to get popcorn "corn" and lemonade "ade" at the clubhouse. It was a morning ritual. His other highlight was the waterslide at the Marriot (our good friends were staying there). When he hit the water, he said "more!" Anyways, it was a much needed getaway and everyone was happy.

It is hard to come back to cancerland. I liked the warm weather, perfectly manicured yards and breakfast awaiting me in the morning. Things aren't quite so perfect here, but we are plugging away at his treatment and getting closer to the end, so I guess we'll just have to perservere.

California or Bust!

You might think it was December around here as it is snowing and the stockings are hung by the fireplace. This past Christmas was so stressful and chaotic, we decided to do the stocking thing over, but this time they had sunglasses and flip flops, snacks and airplane toys because today we leave for CALIFORNIA! We have kept it a secret until this morning to make sure Jordan would be safe to go, but he is doing well, so today at 3:30 we will leave for my parents' house in Palm Desert. To say we are excited would be the understatement of the year.

Easter

Jordan is doing better and we all had a nice Easter.

Friday

Life is really hard when you start to expect to be disappointed. It has been a rough week and very much of a blur. Jordan has had a urinary tract infection which has made him sick. We have been to the emergency room in the middle of the night, several times to the clinic, have talked to numerous doctors, and unfortunately missed the Wiggles today. It was so sad. I really wanted to tell them how much they have meant to me. That sounds so silly, but there have been so many nights that they were the only thing that distracted Jordan from how rotten he felt. I am really grateful for them. But, Jordan was not feeling well and the trip to Tacoma was not a good idea. We went to the clinic instead. Really the only good thing this week was that 2 surgical procedures were performed yesterday and went well. Jordan had his central line removed and a stint replaced in his ureter. He will get a different more temporary kind of line in a couple weeks, but we were glad to get rid of his port as he has had so many infections and it was the likely cause. Lots of medical jargon, sorry, it's all kind of complicated to explain. He's doing ok tonight, but not feeling that great. Hopefully, tomorrow will be a better day.

Wiggles Here We Come

Jordan gets to meet the Wiggles! He is one of eight to meet them at the Tacoma Dome next week. He's practicing his dance moves now. Things are looking up.

Good Scans and the Eating Habits of a Stressed Out Cancer Mom

We had scans today. I have been so anxious about it, I couldn't talk or even write about it in the blog. Good results were anticipated, but there has been so much bad news in the past, I was very stressed.

Yesterday afternoon I spent some time online researching our family's new cancer prevention eating plan. I put out a vegetable and fruit platter for everyone and then I went running. Anxiety was closing in so I spent my run praying and yelling at stupid cancer. I got home and headed out to dinner with my friend who was also trying to distract herself from some stressful life events. We had Jak's steak sandwiches with french fries (not in the cancer prevention eating plan), then went shopping at University Village. Lucy's and Anthropology are good distractions for us. A restless night of sleep and then waking up with that feeling of really, really not wanting to do this day. I couldn't eat breakfast, my stomach was so upset. As we passed the drive through Starbucks, Jordan yelled, "Mom, fee (coffee)!," thinking I had missed the turn off, but I couldn't drink coffee either.

Jordan was a champ. We opted out for the anesthesia as I thought he could hold still for 5 minute scans, and he did great. He held very still and held his arms up in the perfect position. He was a pro for his exam and chemo too. And the great news is, the scans were clear. No cancer in sight. What a relief! Our celebration food is Kidd Valley, also not in the cancer prevention plan or the get fit regime , but Brent brought us back lunch anyways. On the way home, we stopped at Starbucks and Jordan said, "Mom, fee, Yeah!" I'm back to my vegetable platter this afternoon and we are praising God for our beautiful cancer free son.


**Another piece of good news is that Jordan's cousin Ben is home ahead of schedule and doing well. Thank you for including them in your prayers.

Marathon

I've started running again as a way to get out and to rid myself of all the weight I gained sitting in the hospital for a month. I am a very inconsistent runner. One day I've got lots of energy, the next I'm dragging. It's all a big analogy though. As I run, I think of it as our battle. I'm going to run hard, this cancer is not going to beat me. The last lap, I'm going to run faster. Pretty soon, I'll be running a marathon, like my friend Shannon. But, most days my legs are like concrete, a quarter of a mile and I need to walk. I get home and I'm dead tired.

Jordan is amazing. Cancer won't beat him. He has tons of energy for this marathon of a cancer battle. He bounces back and he's stronger. He says "thanks" to the nurses after they poke him with needles and give him chemo. He runs around the hospital. He takes joy in the simplest things. He is an inspiration to me.

Me, my mind, body, and soul are dragging to the finish line. As the phone rings notifying me of the numerous scans, surgical procedures chemo days left, as we head to the emergency room on the night I need to sleep the most, as we perform the endless medical procedures around the clock, I'm not sure I'm going to make it. But, I refuse to let this beat me, so Lord help me, I will crawl across the finish line if I have to. Jordan will run.

Jordan's Friends

I've done my share of complaining about crazy things that happen at the hospital, but one thing I haven't said enough about is the outstanding nurses and staff. You would think by now that Jordan would hate going to the hospital, but as long as there is no pain or getting him out of bed in the middle of the night, he considers his visits to be trips to see his "fwiends", of whom there are many. Today, we had time to kill in between appointments, so we did the rounds from the clinic to the floor. This included being lifted up several times to see the unit secretary who often has stickers or some kind of treat for Jordan. We saw several of his favorite nurses who give him hugs, sing funny songs, do crazy cheerleading routines, whatever it takes to make him smile or laugh. He talks the whole way to the hospital about Sue (the nurse practitioner) who kisses him , calls him silly names and lets him play with her stethascope. All the nurses in the clinic are his "girlfriends" and he never comes home without being covered head to toe with stickers. It is an amazing accomplishment that he has a positive attitude about being there. How thankful we are for those who take their job to the next level and love and care for Jordan with the best they have to offer.

Out

We're home. Jordan is feeling fine. More pain in the neck antibiotics to do, but we're out.

Back in the Hospital

We are back in the hospital. It has been a whirlwind of issues, and we now may be leaving tomorrow. We've been here two days and actually started out neighbors to the Townes. It has been so busy I haven't been able to update this site. Jordan has another blood infection, has had more issues with the kidneys and now may need his whole central line switched out. We have had the greatest of care, but are very tired of this place.

Ben's Stem Cell Transplant

Please pray for Jordan's cousin Ben. The actual stem cell transplant takes place today. This is a very crucial part of his treatment.

Hair

Jordan has got some hair back. This new chemo does not seem to be making it fall out and he is looking himself again. He's doing pretty good this week. Brent went back to work so that has been an adjustment for me. Chemo starts again on Tuesday.

Some Advertisements

It is very worthy of being said that at a time like this when faith and suffering are mysteries to me, the thing that totally makes sense is the Body of Christ. I have to put forth some advertisements...our church, Calvary Fellowship has been amazing. We have had meals provided for us for over a year, cards, financial support, gift baskets, phone calls, prayer meetings, work done on our house, the list goes on. They have been the hands that carry us, the eyes that see the way for us, the ears that hear God's voice when we cannot, and the heart that loves and suffers with us. We are forever grateful.

As many of you know my cousin's son is also battling cancer. Their church, University Presbyterian, has also been there for us. It is a sweet thing to hear our pastor pray for Ben and Jordan and then to hear about their pastor praying for them together also. They provided the incredible camp we attended last summer, have visited us, sent us financial support and loved us even though it is not the church we attend. What a picture of how things should be in the Body.

Another sweet gift we have received has been from the mayor of Edmonds. What a surprise to hear that letters were sent to many businesses in the city telling our story and we are almost daily receiving gifts of encouragement from many of those businesses. Here is a list of those businesses as some have asked...Anthony's, Petosa's, the Pancake Haus, Dairy Queen, Top Foods, Portofino's, the Wooden Spoon, and Baskin and Robbins. I'll include others that come in. I've never experienced this kind of community support from so many we don't even know. What a blessing.

Shorecrest High School, where Brent teaches has graciously allowed Brent to be home these last several months by so many giving him their sick days. It would have been impossible for me to do this by myself. They have been completely supportive of our whole family through this ordeal.

Our family and friends, you know who you are, and many others that we don't know have given to us so generously. We hope you know that your support is what helps us get through each day.

Round 2 Over

A nice young couple from church brought us dinner tonight. The kids couldn't stop commenting on how young they looked. I said, "Dad and I used to look young like that." In fact, until a year ago, people still thought I looked young. I think I've aged 10 years in the past one. However, Tate was nice enough to assure me saying, "You don't look old, Mom, you're just like an intermediate adult." I'll take it, I guess.

Jordan finished his second round of this new chemo today so we are 25% done. He didn't throw up nearly as much and managed to run laps around the clinic most days this week. Hoping for a peaceful week and a half until round 3.

Congratulations to Jordan's little friend Jenna finishing her last round of chemo this week! Please pray for Ben as he gets ready for his stem cell transplant on the 11th.

Friday

I meant to update sooner, but haven't gotten to it. Jordan's "procedure" on Tuesday went fine. It was actually more like a surgery as we found out-- his 6th in the last 2 months. It started out crazy as his line wasn't working right. The nurse working with us was trying to get an additional test done while he was under to check what was wrong with his line. It proved to be complicated to get the right people to communicate and she was very frustrated and complaining to me about how difficult her day was going. I was tempted to ask her if she would like to switch positions; I'd make phone calls and she could be the mom of a 2 year old with cancer stuck at the hospital the whole day for yet another "procedure." Some people just don't get it. One of these days I won't hold my tongue and some unlucky person is going to get my "cancer rage" as my cousin Carin likes to call it.

Anyways, chemo started again yesterday. Some throwing up last night. We were hoping to avoid it this time, but maybe it won't be as bad. We'll see. He's sleeping well now.

Parenting a 2 Year Old with Cancer

First rule is that all rules are out the window.

Tantrums: If you want to throw a tantrum, go right ahead, seems perfectly appropriate for the situation. I've been throwing some tantrums lately too.

Watching DVDs: Skies the limit. Always being hooked up to some kind of restraining tube or pole along with exhausted parents have made Elmo, Bob and Larry and the Wiggles members of our family.

Meal Time: Breakfast today consisted of cheetos, a waffle, a fruit juice popsicle, cheese, turkey, chocolate milk and juice. Each had about one bite or sip taken. We are desperately trying to get him to eat so anything goes when you get your nutrition from a tube.

Home

We made it home. Jordan is doing well and feeling much better. He has to go in for an appointment tomorrow, then a procedure under anesthesia on Tuesday, then chemo Thursday, Friday, Saturday, Sunday, and Monday, and then maybe a break. We'll hope.

Tuesday

Things are resolving and Jordan is doing much better. He wants to run around in the halls but ends up in a mess of tubes. They will probably send us out today or tomorrow. We will have to come back for another procedure in a few days and then chemo will likely start again next week. I guess one good thing is now we think it wasn't the chemo making him throw up so much. So, this time hopefullly Jordan won't feel so yucky and it won't require 4 loads of laundry a day.

Saturday

Well, we are here until at least Tuesday. After such major surgeries there are often complications, but Jordan has had more than his share. They found some blockage in one of his kidneys and there is also some kind of infection they think in his urinary tract. The doctor wants to make absolutely sure everything is under control before we are sent home and that involves all the big wig doctors conferring, and of course they are not all here till Tuesday. We are appreciative of the excellent care we get but are tired of this place. Brent and I had to laugh when the girl in the ER asked us if we needed a map of the hospital.

here again

After two weeks of Jordan throwing up and not knowing exactly why (except the thought that things were associated to chemo), we made a 5:00am trip to the ER. From more scans/xrays we learned that one of Jordan's kidney's is not working and have been here all day. Jordan is just coming out of an evening surgical procedure to help correct the problem. The hopeful plan is that things get resolved in the next couple of days and we won't have to stick around here for too long. Thanks again for keeping us on your prayer list...love the busbys

1st Round Completed

Jordan finished his first round of the new chemo. They said this drug usually doesn't cause nausea, but it did for him. He seems to feel fine in between it all, but it has been a lot of sleepless nights again for Brent and I. While he has recovered well from the surgery, I can't say things are a whole lot easier yet. He finally decided he wanted to eat tonight and had some chicken and icecream. He actually wrestled Sitara for her bowl when we wouldn't give him more, but eventually threw it all up. It is very frustrating. The feeding tube drives us crazy. The pump is always beeping about something. He does wear the backpack now, but we are still very anxious be to rid of the whole system. It is slowly getting better, but Brent and I are running on empty.

BIG "Mo"

That's abrreviated for BIG "Momentum". We are gaining strength and momentum for the final 6 months of chemo. In the last few days we've seen a new and improved Jordan. His heart and determination have been relentless. He is even more passionate about life and bringing the "spunk" to the party. A couple of nights ago itunes was playing a watoto children's choir song (cast your burden...and be lifted higher, higher). Without prompt or cue, all four of the children were singing along with the music while holding hands doing a circle dance together. The sheer joy and exhileration of being home together and knowing that Jordan was on the mend, back to working on his dance moves; it had inspired them to a special display of sibling unity. I happened to walk in on it and quickly snapped a picture of the moment as a reminder of how the LORD can turn bad to good and answer the many prayers spoken for healing. Present prayer concern is for the new "insurance" chemo round starting Monday.
"Cast your burden on the LORD and He shall sustain you" Psalm 55:22

Update

We've been home for a week now. Jordan is doing well and is mostly back to himself walking around and getting into everything. It has been difficult for Brent and I as he still requires a lot of nursing care and Brent really got no time to recover himself. Not a lot of sleeping or relaxation going on over here. Thursday the iv antibiotics are over and that will make things a lot easier. We are really hoping to get him eating again more normally so he can get rid of the feeding tube. As of now we have to follow him everywhere with the backpack and that is a huge pain in the neck. He starts a different chemo drug on Monday. It will be Monday - Friday for about 1-2 hours each day in the outpatient clinic. We will do that every 3 weeks for about 6 months and are looking forward to then being done with treatment.