Saturday, December 27, 2008

update on my nephew

Nick's finished his round of chemo.... It was a clinical trial drug combination that lasted 5 days (or nights!) He finished Tuesday night without much incidence. He's been dealing with heart rate issues and low blood pressure and some nausea and vomiting. Christmas day he looked and felt great. This morning, my sister called and said Nick was running a temp of 103. About an hour ago, he was sleeping...taking 2 new antibiotics and morphine. The next 30 days are critical. His "counts" (neutrophils, a portion of the white blood count that is important for fighting infections) were down to 450--from a healthy normal of 7500 or a pediatric cancer normal of 1500) --and down to zero today. It's to be expected, but it means that ANY infection could be deadly. Please pray for Nick's health, and for his family.

And join us on our Facebook group Pray for Nicholas if you want more information! Email me for an invitation. :)

Thanks for the prayers.

Friday, December 26, 2008


Jim was the photographer yesterday, and Brent didn't make it home. :*(

The snow continues...

Yep, it's STILL snowing at our house. 10" and growing...unheard of for this area. Hopefully one of these days it will stop. We live at the top of a small hill, but it's enough to keep us mostly housebound right now because of the ice. If only we could find our sleds!!

Wednesday, December 24, 2008

a bit melancholy

PIGPILE ON HAILEY!! This is my favorite picture from Christmas 2007. Top to bottom: Ryan, Nicholas, Teddy, Victoria, Emily, and Hailey.

Surprisingly, it's been a hard day. Watching the snow fall outside also meant watching our plans for Christmas with Jim's family fall apart--it's just not possible to get from here to there and back with the weather the way it is. I had to call my sister in law and cancel. It's beautiful around here, and we'll be treated to a very unusual occurrence--a white Christmas--but for a variety of reasons my heart isn't truly in it.

Not being able to spend Christmas with Jim's family is one reason. I love my brothers in law and their wives, and with Jim's parents gone, this is one of the "big" things we do together every year. I am sad for Jim too, since I know that he truly loves the time with his family. Even with an alternate date on the calendar, we are going to miss being with all of them.

It's hard to watch my nephew and his family continue to deal with the hand they have. Leukemia is a nasty disease, and Nick is fighting valiantly. I know that he's gone from being nauseous to doing some vomiting, and that's not fun. He's having some heartrate issues from the drugs as well. That's hard. Watching that family adjust to their new normal--a 5 week hospitalization 500 miles from home, a very sick little boy, a strange apartment, none of the comforts of home, some less-than-supportive family--hurts. I can't just fix it, no matter how much I'd like to. Seeing my parents struggle with the same issue as they watch their daughter hurt and their grandson so ill is hard. Not knowing what to say, what to's hard. I'm sure there are lots of things that I could do that would make things easier for my sister, but I don't know exactly what they are and she's not been one to ask. She's pretty independent! :) But in light of the road they're traveling, thinking about a "joyous" Christmas is hard.

And I miss my son. I know that he's going to be fine even though he's not coming home. But my mama-heart longs to have him here. I HATE the thought of him being alone for Christmas, and I am struggling with the fact that his Christmas presents are still under my tree because the weather's been so terrible I haven't been able to get someplace to ship them! So my firstborn will be without his family and without any gifts at Christmas this year. This year, missing Brent has taken on new meaning, since my other sister and her family will be here from Chicago. It's been years since we've all been together for Christmas, and Brent's not able to make it. I know that Nicholas and his family won't be with us tomorrow, but we'll all be together on Saturday for a celebration at the hospital. Missing Brent that day will be hard. At this point, it may be the last Christmas my family will ever be together, since we don't know if Nick will make it. The odds are against him. Many are praying for him, and I know that God still performs miracles. Even still, we are working hard to make every opportunity count.

There are bright spots this year: my children are delightful and helpful; we are all healthy and our bills are paid; we have the honor of having my sister and her family out here for Christmas (and we appreciate their sacrifice to be here!); and we can see Jim's family soon and will have a wonderful time when we do. As always, the best part of Christmas is the REASON we celebrate. Life without Christ would be meaningless. Knowing that He came as a baby in such humble circumstances is overwhelming. Understanding that He loves me just boggles my mind. I am grateful for that most precious gift at Christmas, and I will never lose sight of that.

Even when my heart hurts and my tears fall....

Logan's craniofacial visit

What a great visit! When we saw the ENT in August, it was SO disappointing! We were told that Logan had no hearing issue, that the audiology report was flawed, that his balance issues had no relation to the fluid in his ears, and that if, by some strange chance he really did have a hearing issue our only remedy was to "have him sit in the front of the class." OY! Anyway, I talked to our nursing care coordinator and requested that we be able to see the other ENT from that point forward. Good choice!

Logan started the morning with another hearing test. He failed again with nearly matching results. That was a relief--we weren't imagining the issues. Then we saw the new ENT. AMAZING!! After looking Logan over and reviewing his audiology report, it was recommended that we consider doing ear tubes. The hope is that it will help his hearing issues since the audiology report shows a mixed loss. If it doesn't work, then we'll take him back for a CAT scan of his ears and proceed with hearing amplification for him. Praise God! We are so grateful--a doctor who listened to us and believes that we do, in fact, have an issue that can be easily addressed. Our greatest hope is that one of these options will unlock more language learning for him!!

We also saw the craniofacial pediatrican, the speech language pathologist, and the plastic surgeon. All the visits were successful and it is so nice to see Logan with new eyes. Seeing their delight in his progress makes the painfully slow steps he seems to be taking so much easier to take. All the tests and evaluations point to excellent progress and no need to be seen for at least 6 more months. They agreed that his speech therapy seemed to be very effective, and that we should just continue doing what we're doing. Everyone agreed that the ear tubes or hearing amplification should accelerate his progress significantly and are looking forward to seeing him post-surgery. And so we're done with the Craniofacial Clinic for a bit, but we do have a minor outpatient surgery coming up.

Two days ago, I got a call from the ENT's scheduler, and they will fit Logan on the surgery schedule for January 6! Only two more weeks then our baby may be able to hear better. We can't wait! What a great Christmas present...

Monday, December 22, 2008


Yep, Seattle's been blanketed. I've lived here most of my life and don't remember seeing this much snow. We had snow on Saturday Dec 13 and Sunday Dec 14, then snow showers again on Wednesday, Thursday, and Friday. Saturday afternoon it started snowing and didn't quit until 4:00 this morning!! We got up to about 10" of the white stuff.... So incredibly strange. But it fits with the rest of my week, so I'm going with it.

I don't have any pictures of my guys playing outside in the snow--Jim drove my car to work this morning and my camera was in it--but I do have a couple pictures of the house that someone else took. Drifting snow is unheard of out here! Snow is usually so wet that it just packs down, but this was light and dry and we had some serious wind Saturday night and Sunday. One of the girls said when looking outside: "It looks like we live inside a snow globe." Pretty accurate description!!

I have lots more to post--Logan's craniofacial clinic visit update and news about my nephew are both on the list. But I have a girl with the stomach flu who is pretty miserable and has been needing mama, so I'm outta here for now. Sorry the pics are so dark. Apparently someone was up early this morning!

Friday, December 19, 2008

um...what was I thinking?

...when I said yes to today?? First off, we have snow. Enough snow that school's been canceled. For the third consecutive day. Now, understand: I LOVE the snow. But we have almost none at our house. snowed all around us, but there's like 1/2" here. Ugh. And it's cold! VERY cold. Today's high is like 26 degrees. With wind, of course, so it's not like kids are going to go outside and play that much.

And so, with that background, exactly what is it I said yes to? Well, last night we had "the cousins" come over. Their daddy, Jim's brother, is have a major procedure done today at a local hospital and they needed someone to take care of them. No problem! After all, two of the three go to school, and I can drop them off. Uh yeah. So in addition to my 5, I have a 10 year old, an 8 year old, and another 4 year old. They'll be here all day if everything goes smoothly; longer if it doesn't. And as a bonus, I had volunteered to watch some absolutely darling little girls for some friends while they go out and celebrate their 10th anniversary. Again, no problem. These two sweet girls adore my crew, and we were headed to watch Hailey and Tori play basketball this afternoon. Entertainment, big girls, and a huge place to play. Sounds perfect, right? Well, add one 3 year old and one 13 month old to the mix at the house. No school means no basketball and no entertainment.

Yep. You counted right: 10 children here, ages 17, 16, 14, 10, 8, 4, 4, 3, 3, and 1. All day. It's a darn good thing I love them all and I know that they'll do fine together. Otherwise, it might just send me over the edge. And once again, I am blessed by and grateful for my teenagers. They're on board with this, so everything ought to be peachy.

Now, if only it would either warm up or give us some snow to play in, things would be perfect! Pictures later, even if it's only one of the whole group.

Monday, December 15, 2008

a Logan funny and an incredible blessing

Friday, Logan had his screening at the school district to see if he is eligible for speech/physical therapy/occupational therapy from them. Overall, there were no surprises and he will be evaluated in depth after the new year for speech and occupational therapy. We'll make decisions at that time as to what we will do.

When we were there, the speech therapist asked Logan his name. He answered "Logan" without hesitation. Then, she asked him for his "other name." He looked at her for a minute, puzzled. Then he looked at me and a grin crept over his face. He knew the answer to this question! I wasn't sure what to expect, since I didn't think he could say Kassebaum. He looked at the speech therapist and said, "I know. RYAN!" I nearly died laughing. The speech therapist looked confused until I explained that he was right, while the "other name" she was looking for was Kassebaum, the "other name" he knew certainly was Ryan, since Mom frequently called him by the wrong name! Smart boy...

And the blessing? Well, Saturday we went to find our Christmas tree. Typical family excursion to the tree farm, saw in hand, ready to cut down the perfect tree. Quietly, I was sweating the cost--trees are expensive, even here in the great, green Pacific Northwest. We wandered through the farm, not seeing anything that we liked. Finally Hailey spotted a tree standing all alone in a field of seedlings. She walked over to get a better look and to confirm that the tag we saw wasn't a "reserved" tag. It wasn't, and the tree was perfect. Along came one of the workers from the tree farm, and I was sure we were going to have to start hunting all over. But NO! He walked over to let us know that because the tree was in the way of the new field, the tag on it that said $25 was the price they wanted for the lonely tree. AMAZING!! Happily, we cut it down, tied it to the top of the car, and headed home. God is good, ALL the time!

I know I need to post pictures and I have some other things to post, including news about Logan's visit to the craniofacial clinic today, but first I'm going to enjoy the beautiful sunny cold (VERY cold) weather with my children! It's such a treat...