Two years to go

So Sarah's ANC number was 1300 on Monday.  That meant that we got to start her next round of treatment.  It also means that I am writing this from the hospital.  It also starts the two year clock for when we will be done with her treatment.  We are told that once we hit maintenance, the treatment is pretty easy.  It drops down to an appointment a month.

This round of treatment is when Sarah gets a large dose of methotrexate over the course of 24 hours.  She then needs to clear it from her body.  The doctor's told us to expect Saturday or Sunday to get out of the hospital.  We are telling Sarah that if she drinks a lot, she can get out sooner.  She has done a good job today about drinking and eating.  We hope she keeps this up.

She is able to have visitors between the hours of 8am and 8pm.  The unit asks that anyone who is sick to not visit since they are many kids that have a compromised immune system.  She is in room T-3267 Bed 2.  She is sharing the room with a cute 2 yr old who had a form of lymphoma.  The other girl is on her last treatment, and should be home and done by Christmas.  Sarah enjoys having the other girl to talk to across the room.

We are grateful for all those who lend support.  I know that Jess has already had to call a couple of people to help out at the last minute.  I am grateful for all of you that help out.

Thanksgiving week update

Sorry for the lack of an update this week.  It has been a busy week and I blame the turkey for being slow in getting the post up.  We saw Rob and Gloria off on Friday.  It was good to have them here and share Thanksgiving with them.  We loved having the help.

A couple of highlights from the week.  We were able to get a baby-sitter in on Monday and go out with Rob and Gloria as well as our friends the Barlows.  We went to an Indian place that we love, and the Barlows introduced us to some amazing gelato.  It was good to get out of the house with Jess and have a night away.  Thanksgiving was great, with lots of food.  It was a nice relaxing day too.  Jess, the girls and her parents were able to go on Friday to the last dress rehearsal for Cinderella that is coming to the 5th Ave theater this week.  They got tickets through the Make A Wish foundation.  They had lots of fun and were very excited.

Sarah was still on her antibiotic until Wednesday this week.  It took her a while to get her numbers back up.  Her ANC was ~350 on Wednesday.  This meant delaying the next round until this next week.  The benefit to that was that she didn't have to be in the hospital for Thanksgiving.  She has an appointment Monday morning.  If her ANC is above 750 (which we think it will be), then she has a back poke right after her appointment and she will be admitted on Tuesday for the next round.  That also means that we will start the 2yr clock.  We then have an end date for her treatment, which is exciting.

This next round of treatment will be different because Sarah will be admitted into the hospital every two weeks.  She is given a high dose of methotrexate and needs to clear it from her system before she is released.  This usually happens within a few days, but if she doesn't drink, it takes longer.  Hopefully, she will be in the mood to drink, as she hasn't been eating or drinking much the past week.  We also hope that Lilly and Gus are good for Jess, so she won't get too stressed with me in the hospital with Sarah.

We were all able to go to church today.  It was good to be there as a family.  Lots of people were excited to see Sarah.

We are grateful for all the love and support that we continue to receive.

Sunday update

It is a beautiful Sunny day today in Seattle.  Even though it is getting cold and starting to feel like Winter. Sarah is still on the anti-biotics that she was prescribed at the hospital.  This is because her ANC number hasn't gone back up yet.  We had appointments to check on Thursday and Saturday.  It was 0 on Thursday and 10 on Saturday.  It needs to be above 200 before they take her off the anti-biotics.  Her white blood cell count is coming up as is her platelets and hematocrit.  That also means that she stayed home from Church today.

The good news is that she is finally starting to act like herself today.  She is eating more than a couple of bites (this started yesterday) and she is happy and playing.  In fact, I was playing "shooter" with her.  She has a hanger that she pretends is her gun.  I pretended that she shot me and I fell on the bed "dead."  She then says, "now it's level 2."  That meant it was time for me to get up and play again.  I had to laugh at that.

Rob and Gloria, Jess's Mom and Dad, are in town for Thanksgiving.  We are excited to have them here and be able to have some fun with them.  The probability for Sarah starting the next phase of treatment this week is small since her ANC needs to be over 750.

Thanks for all those who are praying and thinking about us.  Thanks for all those who are doing little things to help make our lives easier.   We feel the love and support and are very grateful for it.

Back home again

Sarah and I are back at home.  The hospital stay was nice and quiet.  Sarah multiple times said she wanted to be home.  Unfortunately, we have at least  4 more stays of similar length (maybe longer) with this upcoming phase of treatment.  It is not something that we are looking forward to, but it will be nice when it is done.  Sarah is on two antibiotics until her ANC numbers get above 200.  We hope that is Thursday when we go to clinic next, but we will see.  The lab results from Tuesday morning's blood draw showed her white blood cell count rising.  This is good news and keeps us hopeful for a short duration of her antibiotics.

Thanks for all the prayers for us.  We feel it and it helps to support us.

Crazy week update

It has been a crazy week.  I have put in some longer hours at work this week and some of the house has been a little sick.  Just one of those weeks.  Sarah's appointments went well.  Because of her numbers, they had her come get labs in the clinic on Saturday.  Her numbers were high enough, but they want them to check them on Monday as her platelets might need to have a transfusion then.

It looks like she will have a week off were they just take labs and then we will start the next round the following week.  The next round involves hospital stays since they will give her a high dose of Methotrexate over 23 hours, and then make sure it gets out of her system.  She will then have 2 weeks to get her numbers back up before they do it again.  This happens four times as part of this next round.

I took Lilly on Saturday to my office.  I had to get some extra work done and wanted to give Jess some down time without Lilly.  She loves to come to the office and play.  I have nerf guns that she loves to shoot, as well as write on the whiteboards.

Saturday night kept the trend for the week.  Sarah had a low fever on and off for most of Saturday.  It would bounce between 99 and 100.  We were keeping an eye on her.  She had some pain medication in the evening.  At bed time, she was super hyper.  We got her calmed down and thought we were done with another day.  Gus had fallen asleep yet and started coughing.  Jess checked on him and he had spit up.  After cleaning him up, we put him back to bed, when we hear Sarah start whining.  She needed to go to the bathroom.  As part of that we checked her temperature.  It was 101.3.  Above the magic number.  Jess placed a call to the Oncology fellow on-call and we packed a bag quick and I took Sarah to the ER.  Her temperature had gone down a bit, but was still close enough that they still admitted her.  So we will be in the hospital 2-3 days as we make sure her blood culture's are clean and she gets some anti-biotics in her.  It also puts me at the third Sunday in a row where I am at the hospital.

Thanks for all the love and support.  We feel it and are thankful for all the blessings we receive.

A funny story

A couple of things about Sunday night.  Sarah has talked a couple of times about having my hair match hers.  She gets excited when talking about it.  Since I needed a haircut, I decided that I would support Sarah by cutting my hair off.  Jess wasn't ready to have a husband with a completely bald head.  The compromise was to cut it down to a '2'.  That suits Sarah and she says that we are twins now.

A few sisters from Church came over on Saturday and helped to clean the house.  It looked great.  We decided to have root beer floats for dessert on Sunday night.  Sarah tipped over her cup and it poured on to the floor, the nice clean floor.  So I had to mop it again so it wasn't sticky.  The funny part was that as we were consoling Sarah, since it spilled on her, Lilly pipes up with the phrase "I thought that was me peeing on the floor."  She repeated this a couple of times with us laughing at the situation.  We love our kids and the joy that they bring to our lives.

We are grateful for all the love and support that we receive.  It helps keep us sane during some of these difficult times.

Sunday Morning Transfusion, again

Another Sunday morning finds us in the clinic.  At least we didn't come through the ER today.  Sarah's platelets were low yesterday, so they wanted us back into today to check them again.  They were low enough to have her get transfused, so we will be here in the clinic for a few more hours.

It has been a busy week.  Sarah had a physical therapy appointment on Thursday.  Sarah likes these appointments but they make her work.  Jess says that at this one, Sarah got tired pretty fast.  The therapist is trying to get Sarah to not walk so much on her tippy toes and to put more pressure on the inside of her foot when she walks.  Maybe that will help her to not be so clumsy.  If that is the case, maybe her dad needs to go to some therapy too.

I worked from home on Friday because my office is being moved to a new building.  We will be moved in on Monday.  It adds maybe 1/4 to 1/2 a mile to my commute on the bike.  That means I will burn more calories in the morning.  Friday evening, I went with the Young Men in the ward to the temple.  I love going to the temple and feeling the spirit there.

On Saturday, I took Lilly to Home Depot for the kids workshop.  She built a picture frame, which is cute. I dropped her off and home and picked up Sarah and took her to get her blood checked.

Mid-Week update

Sarah had an appointment on Tuesday to check her numbers.  It turns out her platelets were low (a '6'), so they scheduled platelets in addition to what was being done on Wednesday.  Sarah's Wednesdays appointment started at 12:30pm and went until 7:30pm.  We went through a bunch of information about the rest of her treatment.  We also did the math on the rest of the more intensive treatments.  We have another 8-10 months before she hits "maintenance."  During the next phase of treatment (interim maintenance), Sarah is in the hospital for 2-3days  every two weeks.  They make sure that her numbers get above the threshold before admitting her for the chemo dose, so it might be longer than 2 weeks between doses.

Gus proud of himself

Gus is walking halfway across the room.  I am attaching a few photos for you, showing Gus walking by himself.  Soon, he is going to be a terror walking everywhere around the house.

Taking more steps

On top of Sarah's issues, Lilly was sick for Monday and Tuesday.  That meant that we cancelled our Halloween and Lilly stayed home from school.  She is harder to take care of when she is not feeling well so it puts an added stress on the Family.

Cute Gus

We are grateful for all the prayers and support.  Thank you all for caring about Sarah and our Family.