Improvement!

We've seen marked improvement in the way that Anya has been feeling! She hasn't complained of feeling 'miserable inside but not out' in over a week! Praise the Lord!

Why the Spinal Taps?

During the Maintenance Phase, Anya's doctors will continue give her a spinal tap once every three months to inject chemo medication directly into her spine. Thankfully, the doctors have never found leukemia blasts in her central nervous system but they give her this "intrathecal chemotherapy" to prevent it from developing/spreading there.

My understanding is that recent research has shown that without this preventative therapy, some patients later develop leukemia in their CNS which is more difficult to treat. Early in Anya's treatment, the doctors explained to us that each of us has a protective barrier between our body and our CNS. If the leukemia can break through this barrier, they find the conditions there good for growth and multiply quickly. Therefore the doctors choose to be "better safe, than sorry".

September Clinic Visit

Anya's spinal tap went much better yesterday than the one she had a couple months ago! It wasn't perfectly smooth, but it was a big improvement and the doctors are confident that they can have the medications regulated for the next one. Praise the Lord!

In general the visit was a good visit. Anya didn't experience as many bad side effects from the pain medication, she recovered quickly and was able to get home by lunchtime. Hooray!

While they were at the clinic, Israel asked the doctors a couple questions. In case you are interested, here are a few of his questions and their answers.

Question: How do you know that Anya has not relapsed since you are not doing bone marrow aspirates anymore?
Answer: When a child relapses, there are several signs that would indicate the leukemia has returned. Anya doesn't have any of these symptoms. One of the first indicators of relapse is when a child's platelet count consistently decreases from month to month. Anya's platelet count fluctuates up and down and up again from one month to the next.

Question: How often after Anya finishes treatment will she have to be tested to see if the leukemia has returned?
Answer: Anya will have to be tested every month for the first year after she finishes treatment, and every two or three months for the next year. After that we'll just look for signs that she is developing properly. For example: Is she is hitting puberty at the appropriate time? Is she is generally happy and healthy and growing?

Question: For several weeks, Anya has been feeling sick more often and is generally more fussy than she usually was the past several months since she started Maintenance. What do think is causing this?
Answer: Methotrexate, one of Anya's chemo medications, can give kids an indigestion-like feeling that they usually don't know how to explain. This discomfort can be further irritated by the other medications she is on. The timing corresponds with when we increased the Methotrexate and Mercaptopurine medications. She needs to take a daily dose of Pepcid-AC.

So we've started the 'daily' Pepcid-AC. Hopefully this will help!

Miserable Inside But Not Out

Off and on the past three weeks Anya has been feeling more sick than her 'usual' since she started this last phase of treatment. She frequently tells us, "I feel miserable inside but not out". We're not sure exactly what that means but we know that we hate that she feels sick!

Some days Anya seems fine, but then other times she is especially sensitive and fussy. In her previous phase of treatment, we asked her doctor about her fussiness and she just reminded us that Anya's medications take a toll on her body and that the fussiness is to be expected. I guess we hoped for some type of "make it all better" pill. But since things were better for a while, and they have recently upped her medications, we plan to ask the doctors about it again this Friday at Anya's clinic appointment. They'll probably say the same thing as before, but we always hope there will be something we can do for her.

Speaking of Anya's next clinic visit...this Friday Anya will have her second spinal tap since we've returned to Kansas City. As you may recall, the last spinal tap was very painful and overall a terrible experience: most of all for Anya (who had to go through it all) but also for Israel (who had to watch it all) and for me (who had to hear about it all). Let me tell you...I was NOT a happy momma when I heard what she went through.

In Toledo, Anya's spinal taps were always done under "conscience sedation" - basically she was asleep. However the Children's Hospital here in KC uses a different type of sedation medication and for some reason weren't able to regulate it properly during the spinal tap procedure. So we're desperately hoping that things will be better this time. Anya's new doctors make no promises, only expressions of their desire that things will work the second time around. If they don't, we'll probably make a STRONG push for them to use the type of medication for Anya that was used in Toledo unless of course, it is not in Anya's best overall health interest.

"Golden" Birthday

Last Friday was Anya's fifth birthday! And as a friend said, it was her "golden" birthday because she turned five on the fifth! We did the usual birthday song and birthday "spankings" on her birthday but most of the celebration was done the weekend before. My parents and brother were in town so we all surprised Anya with a trip to Chucky Cheese on Saturday night and she opened most of her presents that night when we got home. Then on Sunday evening we had a BBQ and birthday cake with a few friends and Anya received one more present.

We're so thankful for our precious girl; she is such a joy to us - I can't imagine life without her! She is sweet, gentle, helpful, God-loving, caring, compassionate, giving and a fabulous sister.

Hard Nights

Last night was a hard night. Over the course of the night Anya woke up five different times: because of a headache, stomach ache, and later vomiting on three seperate occassions. As she threw up, she was dry heaving, tired, and trembling yet she didn't really cry or fuss. She was such a trooper! I wish that she didn't have to go through such nights but I am so proud of her for how brave she is through it all...what a big girl!

August Update

We're back at the steroids again as of last Friday. As usual, Anya has been tired, moody, hungry, and cold. Anya typically experiences the same side effects each month, though it seems like sometimes something may bother her more one month than the other. This month, she has been especially cold. She has been bundled with blankets and a sweatshirt for most of today.


Her monthly clinic visit went very smoothly. She received her usual preventative antibiotic, medicine to sooth her stomach, and IV chemo medication. Her ANC (absolute neutropil count, or the number of a certain type of white blood cells in her body) was still high so they increased the dose of her daily chemo medication by one pill per week.


The past few months we have taken Anya to church on Saturday morning, even though she was on steroids, because she had only had three doses by that point and we knew that she enjoys going to sing to Jesus and to see friends. But this week we decided to keep her home - she seemed to do much better all day! The stimuli of leaving the house and being around so many people must have been wearing her out. So perhaps now we'll just keep her home each month. We'll see...


Israel's mom (otherwise known as "Mammy) and step-brother came to visit about a week and a half ago and just left this afternoon. It was nice for us to get to see them again and for the girls to get to bond with them a little bit. We only get to see Israel's family on rare occasions since they all live on the West Coast so visits are a real treat! Just before Mammy left, she bought Anya & Esther some fun craft supplies - we can't wait to use them! Thanks Mammy!



Here are some pictures of their visit: