Day 2

We're on day 2 of the new chemo. Jordan is not pleased about being hooked up so long. He is feeling fine, and wants to run around. We're doing our best to keep him busy without busting out his line. Very challenging. Our school situation is very complicated, but we are looking to hire a nanny to help in the morning from 8:45-12:45 and maybe be flexible to come at 7 am some days. It would involve some days helping out with the kids at the Edmonds Homeschool Resource Center where they take classes and somedays being with Jordan if he is doing well. Just thought I'd put it out here since we don't have a lot of time to find someone. I'm interested in personal references the most as I don't want to have to do the screening as there is so much going on right now.l

Long Days

Jordan starts his new chemo today. He was hooked up this morning which is going to make climbing running and getting into trouble very frustrating to him. We have talked with several doctors about the upcoming (3 months or so) surgery and it is very upsetting. Brent and I are trying to absorb the sacrifices we're going to have to make for his life. It is hard to take in. We've appreciated your calls and comments. We're hanging out here till Sunday or Monday.

extended stay

Hello again family and friends. We got news from Jordan's primary cancer doctor that new chemo drugs will likey begin as soon as tomorrow or wednesday (5 more days in the hospital for this round of drug). We are now our now officially in cancer "overtime". This next round of chemo drugs is in hopes of making the tumor smaller for an eventual surgery. The news is not good concerning having to be more aggressive about getting rid of the cancer, but we are hopeful for the new chemo drugs to be more effective and that the surgery will get all of the cancer. Thanks for remaining with us in prayer and know that we continue to trust Jesus as our ultimate and Great Phyiscian. love, team busby

Waiting, waiting, waiting

Thank you so many for calling, emailing and asking about us. This has been such an emotional week, it has been hard for me to talk to people or even update this blog. I have hesitated to write this because there have been so many dashed hopes this past week, but there is still a chance that treatment could be at the end. Our doctor has been out of town for the last week and he is the expert on Jordan's kind of tumor. Apparently the results from the biopsy and scans are not as clearcut as we were told initially and he really has the final say. He is coming to see us today and I know he is concerned, but we are hoping once he reviews all the info there is the possibility of some different news. Please pray, it is so hard to be hopeful and then disappointed over and over. We have been at the hospital for the past couple days. Jordan has had unresolved pain from the biopsy and they are trying to get it figured out. We may stay another day.

Life seems at a standstill for us with the constant state of waiting, but then I realize that life is still moving on. School still starts in a couple weeks... birthday parties, soccer practice, Brent's work. It all seems to be coming at us fast.

My cousing Carin is here with Ben who is doing much better, but has been having intermittent fevers, so they are not able to go home yet. We hang out with our family, eating take-out, worrying about our sweet boys, chasing them down the hall in the cars and wishing we were back in Hawaii. Someone asked Carin where Ben was yesterday and she said, "oh he's down at Jordan's condo hanging out." Life just doesn't make sense these days.

Bad News

We just talked to the doctor and he told us the bad news that the abnormal sample showed live cancer cells. This will mean more chemotherapy and a major surgery. It is absolutely devastating news. We won't know more details till Tuesday.

still "on our knees"

thanks for continued prayers from everyone. Today has been another day of waiting and time for prayer. Finally, at 4:55pm, we spoke with dr. Pendergras and he gave us all the info he had. Again, he told us we would have to wait another day because of what they found in the pathology lab. All the samples gave no evidence of cancer. However, one sample of the tumor did not appear like the rest and this continues to cause concern. They again need to look at this sample and will do particular testing to confirm its status- whether it is an abnormal cancerous growth or leftover scar tissue and inflamation. Hopefully, we can have a definitive and praiseworthy conclusion to this ordeal tomorrow afternoon. Love, the busby's
"But those who wait on the LORD will renew their strength" Isaiah 40:31

more waiting

more waiting, as we learned today at 12:30pm that jordan's biopsy samples had been delayed in being sent to the pathology lab. Now we have been told to wait until 4pm tomorrow to have more information. i guess that means more time for prayer coverage. love, team busby

more waiting

had biopsy today

A grueling day of uncetainty and waiting for appointments and doctor conferences; exhausting/stressful. Jordan was a trooper and held out all day until his biopsy surgery at 5:15pm (pretty much no food or water for him since early this morning). The procedure lasted for nearly an hour and half and then he was in recovery for a while after that. Both the urologist and cancer doctors spoke with us tonight before we left the hospital at 8:15pm. The samples from his tumor have been sent to the pathology lab and we will know more information tomorrow (Wednesday). They are hopeful that it is not more cancerous growth, though that is still a possibility as to what it could be. Thanks for your continued prayers...specifically for his pain to subside and for good rest. all our love, Team Busby
(I can do all things through Christ who strengthens me- Phil. 4:13 & be strong in the LORD and in His mighty power- Ephesians 6:10)

on hold

we're on hold for more specific information about Jordan's tumor. The scans today revealed that there is a mass again pushing on his bladder. Worst case is the tumor is growing, but other real possibilities may be that it is scar tissue that has shifted to a different position or that there is bleeding from the dead tumor causing it swell. Chemo has been postponed for tomorrow and we will be seeing a urologist in the morning, in order to set up a biopsy that will take place in the next day or two. Our hope and belief is that the biopsy will show dead mass. Please continue to pray for us during this time. We love you. Team Busby

A Week of Joy and Heartache

I am not even sure how to summarize our week. Camp was incredible. The week started out rough though. We came home from the hospital frantically threw our stuff together and headed out for camp. The first night everyone sat around and introduced themselves. I unfortunately was sitting by 2 parents whose kids had the same diagnosis as Jordan, but their tumors had come back. That night Jordan was up every hour screaming with cramping. His symptoms from treatment are so often the same as they were from the tumor and the events of the night made me extremely upset. Sue, our nurse practitioner helped calm my anxieties the next day and agreed to do his scans early believing that they will give us more peace of mind. So they are scheduled for tomorrow. That day was the spa and as I described before, it was amazing. Things got better with the following night as we tried a new medicine and he slept the whole night giving us more assurance that his pain the following night was due to treatment issues.

On Wednesday morning our other nurse practitioner, my friend Kristin, showed up for the day. She told me that my cousin and her husband were at Children's that day on the oncology floor and their son was being diagnosed. I was in complete shock. Ben and Jordan are about the same age and we had just been in Hawaii with them a month earlier. Even more unbelievable, her husband is a pastor at UPC the church that sponsored the camp. He had commissioned the Side by Side team that Sunday before camp. So all the people leading the camp knew and love Carin and Jeff and they too were shocked. The rest of the week was bittersweet. My family was being served by such amazing people who were going above and beyond to make it a wonderful week for us, and yet my heart was so heavy for Carin, Jeff and Ben. As the news got out to the camp staff, I realized that beyond all the fun there was an incredible prayer team and people praying constantly and fervently for our family and now for my cousin's family. I was overwhelmed. We are believing and hoping for the best for them. And the one consolation in hearing such bad news was that all the wonderful, Christ filled people we met at camp are their church body, and will love, serve and walk with them through this trial. Please pray for them. They have a long road of treatment ahead them and it is overwhelming. Please also pray for our scans tomorrow. This is the final scan that will indicate if we are done with treatment.

Please Pray

Camp has been going great, but we have been absolutely heart sick to learn of a family member whose child has also been diagnosed with cancer this week. Please pray for them.

Tully's, go carts and a whole night of sleep!

Another great day. The biggest blessing was that for the 3rd time in his life, Jordan slept the whole night. We tried a new medication and maybe that was it, but it was a relief after such a bad night on Sunday. The kids competed in the fishing competition and Luke and Brent caught the biggest fish at 7 lbs., they did the zipline, and square dancing, swimming, tie die, beads...it goes on and on. They really go all out. Jordan spent lots of time riding in the golf cart, playing at the playground, doing playdough and climbing in the tunnel. He has been visiting the Tully's cart for smoothies. Regular juice is just not good enough anymore! To say the least, the kids are into it. Brent got to go with the guys today for go cart racing and going out to dinner. We have had a great time. It's nice to have people to entertain the kids and relax a little. Everyone here has different ways of dealing with cancer and a lot of people like to talk about all the time. We are staying away from that. As best we can, we are trying to put all that aside and just have some good time with family. Jordan's chemo has been rescheduled for Tuesday and he is actually going to have his scans on Monday which will be the "end of treatment" scans even though he will have one more treatment which will now be probably on September 7th.

Camp Side by Side

We made it to camp! Everyone is having a great time. It was a rough start, as the kids did the packing and it was chaos getting out of the house. Tate actually packed Sitara's bag for her so she has an interesting wardrobe this week including 2 pairs of pants and 3 shirts (one came dirty) and nothing that goes together, but oh well. They each have their own "buddy" which caters to their every whim. They did water balloons, the zipline, arts and crafts, canoeing, swimming, the slip and slide and have visited the all day free Tully's cart for their italian sodas. They had a spa day today for the moms including haircuts from an upscale salon in Belltown, manicures, pedicures, facials, and massages. The helpers (younger kids) passed out chocolates and brought custom orders from the coffee cart. It was amazing. Jordan likes his buddy. She is a grandma and retired nurse and is great with him and very helpful to me with all the antibiotic stuff. Jordan still having bad nights, but is currently sleeping peacefully so hopefully tonight will be better.

Going Home

We are going home today which is good. We get to do the 4 times a day IV antibiotics again though which is a huge drag. Jordan is back to himself so they gave us the ok to go to camp. I'm really glad because I know the kids would have been really disappointed if we couldn't go, but it is going to be interesting trying to do all this antibiotic stuff there.

Back at Children's

Jordan is back at Children's with another blood infection. He came down with a fever yesterday afternoon and had a rough night. He seems to be doing better this morning and is getting his antibiotics so hopefully he'll continue to feel better. We're not sure about going to the Side by Side camp. If he does well, he can still go, but will have to do IV antibiotics there. We're here at least until Sunday. Thank you for praying for Jordan.