Radiation

Sorry, we haven't gotten to this so far this week. We've had trouble with our internet access. It has been a rough start to radiation. Jordan has been handling it well, but it is different at the UW. They have not been very good at communicating with us which makes things stressful. Jordan has an ear infection and got a fever today so that has added an extra trip to the clinic and the ER. Please pray for us. It has been hard, but we are thankful Jordan is doing ok despite his other ailments.

#5

This is our 5th long chemo. Kind of routine. Jordan is doing fine. His favorite thing to do is climb up the outside of the crib. We're passing our time watching Sesame Street Videos and planning trips for when this whole thing is over. Radiation starts on Monday. I have more peace about it now, but am anxious to get it over it. The last day will be March 30th. Thank you for continuing to pray for Jordan. He is getting better.

Tuesday

We're still kind of a sick house over here. The good news is Jordan does not have any dangerous kind of virus, just a yucky cold. And Luke is still fighting it too. He got an antibiotic yesterday for an ear infections and some fluid in his lungs, so he is doing better too. Please pray for them, and us. I'm really tired. I was having trouble with Tate's spelling words the other day, so it is pretty bad. I could not remember how to spell "paragraph" for the life of me. Anyways, I think we are turning a corner.

Thank you to so many who have brought meals. Jordan (and us) thoroughly enjoyed the enchiladas and chocolate cupcakes tonight. He was covered head to toe in chocolate and was delighted. It is such a blessing not to have to cook.

Sunday

I just haven't gotten to this in awhile, so here is the news. Last Wednesday, Jordan went in for the simulation of the radiation. That consisted of putting him under anesthesia, making him a special shell so he will be in the same postition everyday, making him a special mask and giving him tattoos (they are just little dots), also for positioning. Then they did a bunch of scans.

On Friday he went in for his chemo appointment. The doctor looked at the scans again from last week and said she could see several spots where the tumor was dying even though it is the same size. That was a relief after last week.

Sickness has been running through our house and Jordan has had an on and off cough and cold. Last night, he had a fever. They want you to come in to the ER right away if they get a fever so I was there from 4:00 am till 6:30 this morning. They think he is fine, but we'll get results back from the virus tests tomorrow probably.

Survival

Things have been rough over here. Luke has got a cough which is always makes me nervous because of his asthma. Jordan has it too, but it seems to be getting better. And, Brent has just recovered from two days of food poisoning. I start to get that sinking feeling and then am pulled up by those around me. I try not to brag about my kids, but there are times when it is allowed I think. So here are some bright spots in the storm...

The other night when Jordan is coughing and crying and Brent is throwing up (I am at the end of my rope), Tate comes to the rescue, without being asked, by getting Jordan a bottle of water, setting up his Elmo DVD, getting Brent a glass of water and towels and asking me how else he can help.

Last week as Luke knew I was anxious about the scans and chemotherapy, he gave me 75 cents from his money to buy a snack from the vending machine at the hospital.

Sitara has stopped the mystery writing and has received great reports from friends who watched her while we were at the hospital. She looked at the mess in the living room the other night and said, "Hey Mom, don't worry about that mess, I'll clean it up for you in the morning."

Jordan is so sweet. Even when he is feeling yucky, he reaches over in bed and hugs me, spits out his binky and says ummm mah and kisses me.

And our friends...
Pretending their kids aren't sick and bringing my kids to school (without theirs) so I wouldn't insist on driving.

Taking Sitara on her school field trip.

Bringing me coffee from Starbucks

Doing my grocery shopping

And that is just this week. Thank you for sustaining us.

He will feed His flock like a shepherd; He will gather the lambs with His arm, And carry them in His bosom, And gently lead those who are with young. Isaiah 40:11.

10 More Left

Another chemo appointment is finished. I have kind of a love-hate relationship with those all day chemo appointments. They are agonizing but it feels like we're actually doing something. I didn't mention yesterday another thing Dr. Hawkins said. He said that the tumor had shrunk in volume by more than 50%. The diameter had shrunk by 1/3. This is not new since the last scan, just information we had missed out on the first time. So we are trudging along and I'm doing battle with discouragement.

Bad News/Good News

The scans came back yesterday and the tumor was the same size. It was impossible not to be discouraged. I was really thinking it would be different since he has done so well and they were so good last time. However (it's nice to know the right people) I called my friend Kristin and talked with her for awhile. She said she would call Dr. Hawkins and have him stop by today, even though it was not his assignment to be on the inpatient floor. He came by and said the exact things I needed to hear. The first, which I already knew, was that they don't typically do scans this early with most kids. They usually don't do them till week 12 in which case we would be happy with where he is at and wouldn't have known that it shrunk initially and then didn't. Kristin had said there is no pattern to the way these tumor respond, they don't shrink exponentially. The other thing Dr. Hawkins said was that there is no difference long term between kids whose tumors initially shrink partially, completely or not at all. That seems hard to believe, but is the truth and good news since most kids do really well with this treatment. The only news we have left to hear is the integrity of the tumor. Apparently, they can sometimes tell from the scans that even though it hasn't shrank in size, parts of the tumor are dead. We're hoping to find that out. Dr Hawkins said he would get back to us.

Another thing we found out yesterday was that we no longer have to give him shots. They have approved a new medicine that does the same thing, but only has to be given once after each chemo. So, he will get one shot from the nurses in clinic. I'm glad that it is now their responsibility. So that was one bright spot from yesterday.

I know a lot of people read this that we don't speak to often. I thought I would include some info. that may not be clear. Radiation starts the end of February and will go 5-6 weeks 5 days a week. He will get his chemo then too. It will be modified during that time. He will come in for 3 chemo drugs every three weeks. Typically we come in every Friday for one of the drugs and every third Friday for the 3. We'll start back on that schedule after the radiation. His treatment goes until the middle of September no matter how well he responds. We appreciate and enjoy hearing from so many of you. Thanks for encouraging us.