July 26th update

Sarah had an appointment today and we found out that her numbers aren't quite high enough yet for the next set of chemo.  She is pushed back until Tuesday.  That means that we have a week off, but starting next week, we will be busy.  Sarah will have chemo 5 days next week starting on Wednesday and 4 days the following week starting on that Wednesday.  She will also start radiation the week after next and go for 2 weeks of daily appointments for radiation.  It will be busy.

We have been busy as a family and been starting to get back to somewhat of normal.  Sarah is more of herself and is had more energy than she has had in a while.  We are looking forward to maintenance and hop to get back to a routine.

Thanks for all the love and prayers.  We are so grateful for all those who are continuing to serve us.  Thank you!

July 15th Update

It has been a busy week, but really over the past year, what week hasn't been busy?  We are a few weeks away from the year mark of Sarah being diagnosed with Leukemia.  We have had many people tell us that they don't know how we do it or that they couldn't do what we have done.  To be honest, I don't know how we have done it either.  We have taken it one day and week at a time.  The Lord has sent much support both of people and confort and peace.  Jess and I are looking forward to after the next few weeks, where she is on maintenance and doesn't need such constant care.

On Monday we had an appointment with the radiologist.  We talked over what they want to do in terms of cranial radiation.  Sarah also had a simulation of what would happen during the radiation times.  She got a mask set so that her head won't move during the radiation therapy.  She will be put under for each of these sessions so that she won't move and they can get the radiation in the right spots.

Sarah waiting for the radiologist

If you have followed the blog, you may remember the concerns that I expressed early on in the treatment about the radiation.  I am more comfortable with it after the appointment.  Let me add a few of the thoughts and things we found out.  If you want, you can skip this paragraph.  :)  The amount of radiation is measured in "grays."  The two levels they know a fair amount of the effects are 12 and 24 gray.  At 12 gray, there are hardly any side effects in patients.  At 24 gray, there are some known risks and side effects that are possible.  The dose Sarah is going to get is 18 gray, so right in the middle.  The doctor said that the effects are on an asymptotic slope, but they don't know where the curve is.  In addition, the tests have a wide distribution in effects.  One of the measurements that they do is IQ.  The have seen IQ's both increase and decrease in patients who have had radiation.  They doctor told us that there are probably side effects and the problem is that the first test for a 4yr isn't very accurate.  I have felt that there were probably be some side effects in Sarah.  However, I think if we work with her in school and education, the effect will be minimal.  Some of the possible side effects include a tumor or cancer growing in the brain some years after (the doctors said that about 50% of the cancers or tumors found are slow growing ones as opposed to aggressive ones), some learning disabilities, pituitary gland issues (which can be controlled with hormones), or cataracts (a common surgery these days).  While there are a number of risks involved in the radiation, if she relapses with leukemia in the spinal fluid it is very hard to cure.  We are moving forward with the radiation and she will probably get the doses starting on 7/30 (based of numbers) and going every weekday for the following two weeks.  I think during those weeks we will have at least one appointment for Sarah every day.

Sarah is back on steroids and has been tired.  Her numbers are down so she is confined to the house.  This makes it tough on all of us.  I stayed home from church with her today, and she ended up taking two naps and going to bed early.  The problem with that is that she is up at the crack of dawn.  Fun...

Sarah sleeping on the Sumo Bean Bag

I should have a few things about Lilly and Gus.  Lilly has been having fun with the backyard and we try and find activities for her to go and do so she doesn't get cabin fever.  Gus is all over the place.  He loves to play on my PlayBook and will try and find it when he wants to play.

Guess what I found

Watch how I play

We are grateful for all the love, prayers, and support.  I don't think we could do this without it.

July 7th Update

It has been a tough week.  Sarah has tried to eat us out of house and home.  We have woken up to her standing at the foot of the bed saying, "I am starving.  I want a cinnamon roll."  This week she has also needed to do something every minute.  If she is just watching a show, she will often come to find Jess or I and say "I don't know what to do.  Dad, what can I do?"  It is trying on us between her and Gus needing almost constant attention.

We are so grateful to those who helped out with Lilly this week.  Lilly was able to go to other people's houses in the ward, to the salmon locks, and to a movie thanks to ours who were willing to let her tag along.  This helped out the sanity at home.

Sarah's numbers are doing pretty well this week and we are on track.  We have a week off of the steroids and hopefully she will get a few days of being Sarah before she gets cranky again.

Gus got his hair cut by Mom on Friday.  He got a crewcut and looks great.  It is funny to watch him when you ask him "where is your hair" because he expects it to be longer.  He also found his shadow today while he was running on the grass in the back yard.  He would run across and be so excited that it just followed him along.  When he ended up in the shadow of the house, he was confused where it went.  It was funny to watch him learn and play.

Thanks for all the help.  We are very gratefully for all the help that our family receives.  We are also grateful for the prayers and thoughts on our behalf.