Tuesday, March 31, 2009

Isolation Sucks!

So Elizabeth, Megan and I arrived early Monday morning and hopped the shuttle to the Ronnie MacDonald house. It was SOOO good to see everyone and be together. Ben had been to the ER on Sunday due to the flu (influenza B) and started on some medications. Cari was also feeling punk so dad set down his bags, picked up Ben and headed for the morning round of tests.

We did the blood draw quickly and then had a bite for breakfast. Just as we got back to the Ronald MacDonald house we got a call and the draw had been mishandled so we headed back for another lab draw. We also met with the doctor for a few minutes. We got back and were able to hang out with everyone for a minute or two and then we decided to go get Cari a flu shot to try to stop any other strains of flu from knocking her out. On our way out the door we checked Ben's temperature -- skyrocketing.

Dad and Ben were back to the hospital. Unfortunately, we were 30 minutes late for the Hem/Onc office to see us so we went into the ER again. After 3 hours there getting fluids, Tylenol, and other meds we got checked in.

We are now in isolation on the third floor. This means that Ben and Dad get a 12X12 room together and everyone who comes in has to gown and glove and mask up. I think Ben figured out how to twist the catheter lines so that he could get more visitors. Because Ben is on fluids all the time I forget how fast they go through him. He totally wet through all layers around 2am. Unfortunately, our nurse was a brunette and Ben thought it was mom. When she left after changing the bed he did not like dad very much. He woke up enough to calm down and then slept next to dad for the rest of the night -- and I thought a fold out chair was tight alone . . .

Grandma and all the girls came to see us this morning. Ben was NOT happy when the left without him. He has loved all of the nurses coming in and flirts with every one of them. He is playing with a couple of the hospital volunteers right now. I think the nurses were glad to see dad head for the showers after a couple of days without a shower. Ben's counts are climbing, slowly but surely. We will probably be hanging out in isolation for at least today and tomorrow, then if no more fever we can get released. We'll see how things go. Cari is still under the weather and I guess Nathan started to cough and hack last night, LUCKY!!

Sunday, March 29, 2009

The sky is falling....

Okay, maybe it isn't the sky but there is definitely ash falling on Anchorage right now. Johnny and the girls were supposed to fly to Seattle last night but their flight was cancelled. They rebooked for tonight but.... At some point I am sure we will see them.

Not only is ash falling, but so is Ben's hair. I did a "pull test" last night and ended up with hair in my fingers. Lucky he has such a cute head!

Someone sent me a fun quote recently. "The impossible can seem possible if you're awesome!" I think the quote is from the new Pixar monster invasion movie. We have decided it is a great quote for Ben. He truly is awesome!

Friday, March 27, 2009

Moving Forward

They are wtill watching Ben's numbers pretty closely. He went in today for labs and they were surprized to find that he did indeed have some white blood cells forming. He needed a transfusion to get his red cell counts back to where they want them so he has had his first of what may be many transfusions. Being new to this it is a bit unnerving but I guess things are going exactly as planned. They are targeting early next week for his stem cell harvest.

Once his counts begin to climb he will get a dose of hormones that will speed up the production of stem cells. This should not only increase the numbers for the harvest but help him recover more quickly from the affects of this last round of chemo. Monday or Tuesday they have tentatively scheduled surgery to place another line to be able to do the harvest. Unfortunately, once this line is in place he will be bed or lap bound and not able to walk or run around. I am sure that will make for long days until the harvest is completed. Not long afterward he should probably begin his next round of chemo.

We are still pretty up in the air regarding radiation treatments. We found out that he is not a slam dunk candidate for the proton radiation treatment our doctors have been discussing all along and that only one in five of those that are a slam dunk candidates get in to Boston. We are still on lists for Boston and Houston and hoping that the treatment is available in the timeline we need it. We know the doctors have Ben's best interest at heart and are doing everything they can to get him the treatments he needs.

The girls and I don't have words to express how excited we are about joining everyone in Seattle on Sunday -- barring any travel changes caused by Mt. Redoubt. It erupted again today but there has been some air traffic. Guess all we can do is wait and see what happens tomorrow . . .

Wednesday, March 25, 2009

Looking up

Ben still has a little bit of a fever so he can't go to lunch with mom, grandma, and the siblings but he is much improved from yesterday. When I called he was riding a tricycle around the floor and seems to have some of his energy back. He is NOT happy about being confined away from the other kids. His newest trick is to grab mom's cell phone and lick it or lick her and then giggle as he gets away.

Hopefully he will only be in the hospital for a couple more days to watch his cell counts and then released for a bit between treatments. Ben's neighbor in the hospital has the same cancer. She was out for 5 hours after her last treatment and then back in so this may be a recurring theme but for now we will take the improvement.

Tuesday, March 24, 2009

Rough morning

They have been tracking Ben's blood cell counts pretty closely. As intended his treatment has caused his white blood cell count to plummet to nothing (less than 1% yesterday). So obviously he has no defenses to fight off any infections. This morning he woke up and was pretty pale, very lethargic, and had a fever. Cari and he are checked into the hospital where he is getting a dose of antibiotics and they are working on getting rid of what ever it is that he has come in contact with.

They are waiting on labs now but it looks like they will be in the hospital for a couple of days. We don't yet know if this will set back the timelines for his stem cell harvest or his next dose of medication. It will all depend on how he responds to the antibiotics and how fast his cell counts improve.

I spoke to grandma this morning and it has been kind of unreal to this point. Ben has been so full of life and energy and playing as hard as he can with his siblings. This morning it got real. There he was, a sick little boy looking pretty helpless and resting on his mother’s shoulder. This is not unexpected, just obviously not hoped for.

We extremely grateful for your continued thoughts and prayers!

Sunday, March 22, 2009

Fun at the house

The kids have been enjoying playing together. There is an indoor play area in the basement of the Ronald McDonald house. There is a giant tree with a slide down one side, a big leopard and a turtle to crawl on, as well as a hollow log to crawl through and a bridge to crawl over.

Nathan is such a ray of sunshine as always. So sweet and yet all boy. He thinks all bodily functions are hilarious and lets them rip at many an inappropriate moment!

Ben's head seems to be healing well. I was checking it out tonight to see if I could feel where the bone had been cut... I really am a science geek. Should've gone into nursing like I started out to do.

It won't be long and I will cringe when Ben goes out to play. His blood counts should be dropping rapidly and along with infection I will have to protect him from bumps, cuts, and bruises. It's so hard to have to curtail normal child behavior.

There was a group from a local high school that brought lunch in today. They also brought the easter bunny and some eggs and candy. Ben LOVED the easter bunny! None of the kids ate well because they were so busy watching the bunny. Samantha is an embarassingly good easter egg finder. I made her take some of her loot and give it back so other kids got some too!

Thursday, March 19, 2009

We're Home!

Home, of course, being the Ronald McDonald house... Ben was released from the hospital this afternoon. It is so nice to be in our own space and to be able to spend time with family. As long as Ben stays healthy, he can stay out of the hospital for a while. I have taken a crash course in nursing and have to give medicines, shots, and take care of his central line. It is a LOT of work and a LOT of reponsibility. I already had to call the hospital tonight with questions about his medicine. Ben is happy! He runs, what's new, like any normal busy one year old. He has not thrown up once yet but he is not out of the woods yet. His blood counts should drop dramatically over the next week. We will not only have to watch for infection, but also avoid bruises and cuts. Chances are, we will be back in the hospital for some reason before the next chemo round starts. We are doing well!

Sunday, March 15, 2009


This is Ben riding on his "lilly pad". If you look closely you can see the wood board he is sitting on is shaped like a lily pad.

Sorry, you will just have to turn your head...I managed to post the pictures but I can't figure out how to turn it right side up!

Ben laughed and laughed at Samantha all during lunch today. Then when we got back to our room he just crashed.

He is still my sweet baby boy!

We are still here

To those of you who have been trying to contact us...We sometimes get to read email, but rarely get to send a line back. On occasion we sit by a phone...but not for long before Ben wants to run again. Your efforts are NOT unappreciated and needed. Thank you all so much for the continued support.

So, the update: Ben started chemo late Friday night, or early Sunday morning, depending on whether you are a night owl or an early bird. They took a second liver test and he passed the protocol standards to continue on with the clinical trial. So far, he really has not slowed down. No noticeable nauseau or anything else. We are waiting for the first chemo drug to leave his system before they move on to the next. He was so close this morning....but protocol says we have to wait. Hopefully by tomorrow morning. The next chemo drugs they say are more likely to make him feel sick. He is going in to this pretty strong so I am still hopeful. My goal right now is to keep him eating enough so he doesn't need to eat through a tube. Wish us luck!

Grandma, Nathan, & Samantha have arrived and Ben is so excited to have them here. I am also glad to have theme here as well. Now if we can just keep everyone well and get Ben out of the hospital we can have a little fun together.

Thursday, March 12, 2009

Are you KIDDING????

So after blogging last night I went back to Ben's room only to find they were trying to decide where to move him. Apparently one of his fingertips(where they previously drew blood) had an absess. The surgeon who put in Ben's central line noticed it, lanced it, and sent it off for a culture. Well, it came back positive for strep....they weren't sure which kind so Ben had to be isolated and tested. Needless to say, we moved rooms last night. Ben could no longer leave his room, the nurses had to wear gowns and gloves to enter, and I was only allowed in his room and off the cancer floor. This morning his blood test came back and he does not have flesh eating staph so he no longer has to be isolated. So while we were off having a hearing test (one of the chemo drugs can cause hearing loss) they moved us back to our old room. Ben also had an ultrasound of his kidneys and an echocardiogram done this morning. Then the doctors finally made their rounds. Ben's blood test for liver function was not good. It was one point too high to be allowed in the clinical trial for his cancer.... Now what? Ben's oncologist tried to see us before he left but he is now out of town until Monday. They drew blood again to retest...but we are waiting for results. If it's not one thing, it's another! I don't know what the plan is if he is not allowed in the clinical trial. The other contacts I have are also not in the hospital today. They will be back tomorrow and I am now waiting to hear from them.

Wednesday, March 11, 2009

The Seattle Marathon

Today I ran the Seattle Marathon....the course winds round and round the halls of the cancer unit at Seattle Children's Hospital. Seriously, if I had on a pedometer, I'm sure I walk miles and miles carrying, pushing, and chasing Ben. If I missed your phone call, or didn't respond to your email...well I couldn't quit the race now could I?

Today was also another starvation day for Ben. They were running a kidney function test that left him hooked up to an IV post (yes I was dragging that along during the race). The test allowed him to eat and drink clear liquids and solids that had no sodium in them. I wonder where he got all of his energy? I learned first hand why we don't just let our kids each nothing but sugar all day! Fortunately he has now finished his test, eaten his weight in mac n cheese, and fallen into a deep slumber! (No nap today either...) Now I guess it is my turn. There is more testing tomorrow though....

Tuesday, March 10, 2009

Successful surgery

Ben got his catheter today. Unfortunately, it was a really long day leading up to the surgery. Ben was scheduled to go in at 1215pm. That means that he could not eat after 530am. As you may have read previously, the most dangerous place to be is between Ben and a meal. He screamed for most of the day until they finally took him in around 430 in the afternoon.

I guess the nurses came in frequently to ask if there was something that needed to be done to help calm him down. Yes - FEED HIM! Anyway, after surgery he ate jello, fish sticks, drank juice and pretty much made up for lost time. He longingly looks at all of the older children. I am sure he will be excited to see his siblings come Friday.

Monday, March 9, 2009

Not so uneventful LONG days

As luck would have it during the long days between visits to the hospital Cari has managed to pick up some kind of bug so not only does she get to deal with all of the appointments but gets to do it in a mask and weather all of the cross-way looks from people in the hospital. Ben, however is a fantastic nursemaid. He finished all of the meds that were causing constipation but not the laxatives that went with them so he was able to make a giant mess on clothes, floor, you name it. $*%# truly does happen.

Next he decided that he wanted to try to even out his haircut and got a hold of Cari’s razor in the bathtub and shaved a little patch out of his new fuzzy hairdo. Last but not least he found a care-package Cari received today and was able to shred most of the packaging and begin playing with some of the soap. Such a great caregiver.

As you can imagine, Cari would like to be able to curl up and sleep until she feels better but no such luck with Nurse Ben on duty.

Ben is scheduled to go in tomorrow (3/10) to get his Hickman Catheter. This catheter is surgically installed and the method through which he will receive his chemo, any meds, and the way they hope to harvest stem cells between treatments. He will also have a spinal tap tomorrow to test his spinal fluid for cancer cells. We hope there are none present. This will weigh heavily on whether he will be able to have focused radiation treatments or whether they will have to irradiate his entire body. The total spinal irradiation is not where we want to be because it can negatively impact growth and development much more than the focused method.

On the home front we are missing Cari and Ben more than words can say. We are extremely grateful for family, friends, and ward members. Between the meals, the service, play dates for kids, generous donations, airline miles, and heartfelt support we feel extremely blessed. I feel like not a person passes me by without checking in and offering support. We are excited that Grandma Allred, Samantha, and Nathan will be joining Cari and Ben in Seattle on Friday. I know that Cari is looking forward to having more of the family there for support and to fill what feel like very empty arms right now.

Again, I cannot express how grateful we are for the outpouring of support we have received.

Sunday, March 8, 2009

We've Moved

Ben and I are enjoying a relaxing...okay boring weekend. He can't stand to be in the room so I spend most of my time chasing him around in the halls. At least they are different halls today than they were yesterday. We were offered a bigger room. Our old room only allowed 4 occupants. This room is much bigger. Now we are ready for Grandma, Samantha, & Nathan to come stay with us! Here is our new address:

Ronald McDonald House Bldg A Room 203
5130 40th Ave, NE
Seattle WA 98105

Also, I have experienced some problems with my email lately. If I didn't respond...that's why. Thank you so much for all of your love, prayers, and support. You are buoying us up!

Friday, March 6, 2009

Another Good Day...

The sun was shining & Ben was playing happily throughout the day. His favorite game is chase. He can open pretty much every door in the Ronald McDonald house, so he does of course. When I am preparing a meal in the kitchen or cleaning up when we are done, he loves to sneak of the door and run laughing down the hall as I chase after him. He is definitely the most active child I have seen here so far. Hopefully that will continue to be the case even after starting his treatments. The medical staff are still amazed at how well he seems to be recovering from his surgery. I don't have anything to compare his recovery with but I am grateful to have his busy fun loving self back!

We met with another member of his medical team today. She gave me a huge blue binder full of general information about cancer and the treatments and care he will be recieving. The information I recieve from the doctors, while still a bit scary, sounds much more promising than the things that many of you have read about on the internet. We were warned at the beginning of this adventure to be careful about the information recieved on the internet. Don't let it freak you out either! Johnny and I both still feel good about the decision to continue treatment here in Seattle.

On a more fun note....my children are coming! The two in school will come for a short visit before Benjamins radiation treatment begins. Then they will keep Johnny company in Alaska until summer. The younger two will come live with Ben and I here in Seattle. Mom Allred will be coming as my right hand and second mother. She is an angel and we are so grateful for her. Ben is very happy when he sees pictures of his siblings. I can't think this will be anything but good for him. I know it will be good for me.

Thursday, March 5, 2009

All on my own

I am feeling a bit alone tonight. Johnny is on his way home to be with our other children. I am okay though. The hardest thing for me right now is missing my other children. In order to be a mom to the one, I have to neglect the other four for now....and that is not okay with me. I've always wanted to be a mom. I LOVE being a mom. Hopefully we will be able to make arrangements for the kids to come see Ben and I for at least a little while. And eventually, we hope to be ruinited as a complete family. Home truly never sounded so good.

I can't write anything without expressing my gratitude for you, our friends and family, who are supporting us at this time. You may not feel like you are doing anything but you are. Your prayers, phone calls, emails, visits to our children, etc.... they are helping us more than you will ever know. Thank you.

Wednesday, March 4, 2009

Not what we hoped for but all is not lost

Well, we met with the oncologist right after the tumor board today and the news was not great, in fact just the opposite. The type of tumor Ben has is an Atypical Territorial Rhabdoid Tumor (ATPT) type cancer.

Now I will try to remember everything so it may be a little sketchy. The tumor is very aggressive. We need to begin chemotherapy next week. We have a number of options to consider at this point and are not 100% on everything but this is kind of the tentative direction. Monday or Tuesday Ben would get his Hickman Cathater. Through this they will administer chemo, extract stem cells (part of the therapy -- kind of a modified bone marrow transplant procedure), administer meds, etc. By the end of the week he would begin his treatments.

Ben would do 5 to 7 days of treatment, then be off for 2-3 weeks with close monitoring for side effects. After 2 rounds we will probably need to go to Boston or Houston for a new radiation therapy called Proton beam therapy. It all sounds very "Trekkie" doesn't it. He would receive one radiation treatmene a day for 6 weeks ~ish.

Then he would come back to Seattle for the remaining 3 rounds of chemo. The whole thing will take 6 or so months. With this type of chemo the odds are not great -- 30-50% survival. He has some good things in his corner like his age, placement of the tumor, and the way he has been recovering. The center here in Seattle is world renowned for cancer treatment and in fact we have a new treatment trial available to participate in as well. We will know after the first two rounds of chemo how he is taking to the treatment and whether we will need to go to Boston or Houston or just to go home and enjoy the time we have together as a family.

We have TONS of decisions to make at this point and like I said, still finalizing things. Your continued prayers are very much appreciated.


Today we went for a nice walk and kind of just hung out again. We got a call from the Oncologist and have an appointment for Wednesday at 2pm. I don't know what that means. We are unsure if that means the tumor was easily identifiable and the procedure straight forward so we don't have to wait for the tumor committee; the Oncologist wants to just have an initial meeting; or any number of other possibilities.

It has been nice to walk around in the warm weather. We couldn't have asked for better for these long waiting days. The down side is all of the questions that you have time to think of and all of the possible scenarios you can imagine. We will try to let folks know what we find out once we hear from the Oncologist.

Monday, March 2, 2009

Just Hangin' Around

We had a pretty lazy day today. We walked down the street to get Ben some clothes so he wasn't stuck in hospital pajamas. We pulled a wagon down the street about a mile to the local mall, got some clothes, some lunch, and were simply relaxed. Ben did pretty good.
We went over to the hospital to pick up some mail and ben took a ride with mom on the hippo outside. After we were done we walked back to Ronnie's and took a picture with him. Ben is a little wobbly. He seems to be using both eyes and the left one is still a little bit crossed.
We are all well here. Waiting is no fun but there are worse things . . .

Sunday, March 1, 2009

Free at last - Kind of . . .

It was good to leave the hospital with Ben. We hit the pharmacy and about needed a shopping cart to cary all of the different anti-seizure, anti-stomach ache because of the anti-seizure, pain meds, etc. etc.

We are now just chillin' with Ronnie until Thursday morning. Thursday morning we will find out about chemo, when, where, and how much and if we will start here or in Anchorage and how frequently we will end up coming back to Seattle for check ups.

Anyway, we are still extremely happy to be out of the hospital and have Ben with us. Soon enough we will find out the next steps in this lifelong journey.

Discharge this morning

The doctor came in this morning and Ben ran over to let him in the room. He chuckled and said he can't see a reason to keep us in the hospital. We are being discharged this morning and will be at the Ronald McDonald house until Thursday.

The tumor committee meeting is late on Wednesday so we will check with our Dr. on Thursday morning to find out the plan of action from there. We will probably meet with the oncology team on Thursday some time as well to find out where we go with chemo, etc.

We are still way unsure of where we will be when at this point. We could be on airplanes as soon as the end of the week, or we could be looking for someplace to be here for treatment for a while -- no clue.

Thank you everyone for your love and prayers. Things are looking GREAT!!