Deep in the Heart of Texas

Can you say flashback??? For those of you who don't know, I grew up in Texas. As Ben and I headed to the baggage claim I could smell and then feel the wet air. It is very humid in Texas. Later that night after Ben's blow out, gross to say the least, I drew him a bath of....brown water. You should taste the stuff!!!! I had to take my shoe off to feel the spongy thick bladed grass that grows here. To top it off, the people who brought dinner in tonight brought Mexican food...and I mean REAL mexican food. It was sooooooooo good. Even Ben ate well. (He loves beans and tortillas!) All of this brings back fond memories of growing up in Texas. The title of todays blog is part of a song I learned in Texas History class. We are having a lot of fun at this point in our journey.

What I haven't told you yet is that there was an angel greeting us at the airport. For all of you who have wanted to come put your arms around Ben and I, comfort us, make us smile, and just plain take care of our needs....consider it done. We love her and you for all you do. Thanks!

Today's Scans

Good news. Ben had a lumbar puncture the other day to check his spinal fluid and an MRI today of his brain and his spine. All came back clear!! There is a little fluid in the cavity left from the tumor but that was expected.

Now they can fly off to Houston and try to dodge the swine flu on the way . . .

Houston

Well we did get out of the hospital on Wednesday and it was wonderful! Since then Ben has had blood labs drawn and a Lumbar Puncture, but other than that we have been free. The only other thing scheduled is his MRI on Monday afternoon. They are checking to make sure that there are no new signs of cancer. On Tuesday we are off to Houston to get his radiation started. We "think" we will be staying at the Ronald McDonald house there but we won't know until Tuesday. So for now we are packing and saying our goodbyes to friends here. Many won't be here when we return (good for them!) but others will. When we get to Houston I will post a new address. Thanks again for all of your love and support!

Discharge???

We were just told that Ben is a "candidate for discharge". I was too excited to ask when however! His ANC is 252 this morning. (That means he has white blood cells again!) He also is afebrile. (That means he doesn't have a fever!) His CT scan looked good. (Other than he needs to poop...he has been holding it!) He would still need to take antibiotics orally and if he gets a fever then he has to come back for evaluation. No problem! Wish us luck with his "candidacy!

Cowboy Up

I've always loved this saying. I even considered putting it up on my little boys bedroom wall. Ben doesn't need it on his wall, he is truly living it. Everyone has been so amazed at how happy he always is. One of the nurses on his team asked what it would take to get Ben down. Unfortunately I've come to the conclusion that he probably has been feeling pain all along, but his personality has been masking it. The past few days he has had a hard time. Every bowel movement is excruciating for him. It took him half an hour yesterday to calm down afterwards. He cries and wants me to hold him...then he wants to lay down...then he wants to leave...he just keeps looking for something that will get him away from the pain. I feel pretty helpless because there truly is nothing I can do. They have been offering oral pain meds but he is usually past the pain by the time they would kick in. After 30 minutes screaming and crying last night they now are giving him morphine through his IV instead. Tomorrow morning they are planning to do a CT to see if they can see anything going on that needs to be addressed. (beyond the pain meds and antibiotics) Hopefully all will be well. Hopefully his white blood cells will recover soon and his body can start to heal. In the meantime, he smiles, plays, and blows kisses to everyone between bouts of pain. What an amazing little boy he is!

It's Saturday evening and we are still here!!!!! Ben's white blood count is still zero and his platelets aren't much better. They gave him platelets for the third time this week. Of course now he gets Benedryl and Tylenol before any blood products just in case.... They say he can't leave until his counts are better. Probably a good thing in the long run, but man we are tired of this box!!!!! On the bright side, the sun is out in Seattle. While we can't go outside we have great windows on our box!!!

Our box is big enough to ride around the room on his rocket.

Here is Ben making his own fun....he decided to wear my shoes. He managed to do pretty good. We have also launched blocks with the construction truck, shot saline across the room from a syringe, and built swords out of thermometer covers. Life is what you make of it! Hope you are all having fun!

Ben's Friends Helping Hands Benefit

Some amazing folks I work with put together a benefit fund raiser on the UAA campus. They had this video running in the background. Thought folks might like to see it.

Scary Day

Cari called this morning and said Ben seemed to be a little off this morning. He was clingy, moody, sleepy and not his usual active self. She could not find a fever so there was no real reason to go in to the hospital early.

They had just finished up doing a platelet transfusion not too long ago. On the way out of the hospital Cari looked down at Ben in the stroller and he was shaking like crazy.

She picked him up and headed immediately back to the infusion center. She says she only ran over a few people on the way back.

It looks like he had a reaction to the platelets and was going in to shock. His nail beds were all gray, his color was awful. They are checked into the hospital now and Ben has been given some medications to help get the shock and other symptoms under control.

Cari is sure he is not only fighting the shock from the platelets but whatever had him feeling out of sorts this morning. It looks like things are back under control. Cari was able to have one of the hospital volunteers come into the room while Ben is sleeping so she can run back to the Ronald McDonald house and get a bag packed to stay in the hospital until they have Ben stabilized.

Alone again

Well Grandma, Samantha, and Nathan took off for Utah yesterday. Daddy, Elizabeth, and Megan are back at school and work in Alaska. That means Mommy and Ben are alone again in Seattle. Ben is in the middle of his second round of chemo and doing well as usual. Unfortunately, he is still in isolation. It is amazing how long that flu bug stays in your nasal cavity!



Ben is enjoying playing with all the cool stuff in the room. From taking his own blood pressure to shooting the covers off the thermometers, he definitely knows how to make his own fun. Here he was playing in a pair of the infamous blue gloves.


Most mornings I wake up to a new nurse whispering, "He's so cute!" Despite his shiny head he is still collecting girl friends. Yesterday he was blowing kisses and passing out hugs...He really is fun to watch. We love our Ben!

If all goes well. We will be out on Friday!

Update

Well, I am running out of catchy titles so this will be pretty boring. Elizabeth, Megan and I returned to Anchorage on Sunday morning. We hopped on the shuttle at 5am to make an 8am flight that was canceled. Fortunately we were able to catch the 10am flight so we didn't have to sit in the airport all day long. I had been praying all week to let me stay healthy long enough to be of some assistance and to give Cari some time with the girls. I got what I asked for, but about the time I hit the airport on the way home the sock hit the back of my throat and this morning -- look out.

Cari is in with Ben in the midst of his next round or chemotherapy. He seems to be doing well. As energetic as ever. Unfortunately he is still on isolation so the room is very small with an energetic little boy tethered to an IV pole. We have had fun with Skype being able to video call each other.

Sammy, Nathan and Grandma couldn't come to the hospital because Sammy and Nate are still trying to get over flu symptoms and folks get pretty antsy with immuno-suppressed kids around anyone with a cough. They head for Utah on Wednesday.

That's about all for now. Thank you again to everyone who is taking such good care of us.

Success!

We got word back on the stem cell phareses. According to the fellows that I spoke with they target 15 (not sure of the unit of measure -- I assume million could be thousand) stem cells to be considered a successful harvest. If we hit 15 we do not need to try again tomorrow. Ben hit 86 so he blew the numbers out of the park.

They will do some tests for kidney function in the morning and then will start the next round of chemo tomorrow.

Stem Cell Harvest starting

Well, the surgery to place the second line went as well as it could have. Ben came back pretty groggy tired but well. The nurses are hooking him up to the phareses over the next couple of hours. He is resting well, hopefully he will stay calm through the procedures today.

The plan, as we know it, is to do the harvest the cells today. They will do a check to see if we got enough and let us know by this afternoon. Hopefully tomorrow they will begin the next round of the chemo.

Elizabeth, Megan, and I will head back for Anchorage on Sunday morning. Samantha, Nathan, and Grandma will head for Utah on Wednesday. Cari is not excited about the prospect of being alone again, but we do what we have to do.

A new line & stem cell harvest

Yesterday was long. Early in the morning Ben and I headed in for labs. His numbers skyrocketed. The count they are looking at is his white blood cells and they were 390 two days ago and then 1941 yesterday. We only needed anything over 1000 to shoot for the stem cell harvest. They also look some at the stem counts and need something over 100 and he had something over 400 and that before the double dose of hormones that are supposed to increase their numbers.

We heard from our Doctors that we would have surgery this morning but did not get a call back from the surgery center all day and were pretty stressed out. We arrived at the hospital this morning at 645am for a 730am surgery and were not in the computer. It took long enough to get us in the computer that we got bumped this morning for a couple of hours.

Anyway, Ben is in surgery now getting a groin line put in. Once it is in place he will be able to do the stem cell harvest. This one is only a 45 minute surgery. Afterward we hope to have great success on the stem cell harvest and then he will be admitted to begin he next round of chemotherapy. To get Ben to be calm going in to surgery they took Cari into the operating room just for as long as it took to get him under. Great outfit huh?

The other kids are hoping to get to go swimming today. The flu has been running through the whole lot. Sammy was pretty down and out yesterday. Nathan made the most awful sounds all night long and had somewhat of a fever. Lizzy has been pretty mild, other than one bout with a techicolor yawn while Ben and I were checked in before. Megan and Grandma are the only two unscathed so far (and me). We hope that keeps up (especially for grandma).

Good News

I got a call from Houston yesterday asking for my insurance information. Hooray! I hope that means we are in! We probably won't go there until May though. We still need to harvest Ben's stem cells and then go through round 2 of Ben's chemotherapy. Ben's ANC (blood counts) were up today so that's a good sign. Johnny thinks they will let Ben out of the hospital again today. We are looking forward to actually spending some time together as a family!