Thursday, September 27, 2007

High Spirits and Low Counts

Esther turned 2 years old today and things are going well here at the house. All three kids are happy and smiling, currently playing with Mommy on the floor of the living room while I try to catch up on emails and other computer stuff. Anya still fights side effects (tired spells, increased fussiness, body aches, bowel trouble, and headaches) and is taking a couple oral meds each night that she's not crazy about (a chemo pill and a pill to keep her from being nauesous from the chemo) but overall is doing well and cheerful most the time. Today will be our third clinic visit of the week with one more tomorrow. At each visit they take blood and give her chemo through her port which has remained accessed all week (they'll take the exterior contraption off at the end of her visit tomorrow).
The CBC (Complete Blood Count) from Tuesday of this week showed that her hemoglobin and ANC (Absolute Neutrophil Count) had both plummeted from the latest chemo round. Throughout Anya's treatment her counts have stayed fairly high and the doctors have been very pleased with how well they recover after big chemo doses. They are not troubled by how low these two counts are currently, however the low ANC puts Anya at a very high risk of infection. We are doing our best to keep everyone in the family away from germs and limiting our trips out of the house. We are hopeful that Anya's counts will recover quickly and she'll be cleared to leave the house again soon. She was so happy to get to go to church several times, visit the library and run some errands with me the other day, including a trip to the pet store where we picked up a few more fish for Anya's aquarium (her B-Day gift from Anna and me). At our clinic visit on Tuesday Anya's doctor said that she looked very good and was doing well. I asked how Anya was doing relative to other patients at her stage of treatment and her doctor said she was doing extremely well. She is active, energetic, experiencing a minimal amount of side effects and resonding well to the chemo.
Anna and I are doing well but need your continued prayer for us to have patience, tenderness and strength. In close quarters with a lot of exhaustion, stress, and strange, new circumstances things can get tense. Pray that we'll both learn to demonstrate our love to one another and our children in a greater way during this trial. Thanks again for your love, prayers and support.

Wednesday, September 19, 2007

Wednesday Update

By the time Anya got to the ER Friday night she no longer had a fever. We definitely believe this was an answer to prayers. Her blood cultures have come back negative from that night so we are rejoicing that she did not have an infection. Meanwhile Anya had a routine check-in at the hospital Tuesday morning and is headed home this morning (Wednesday). The overnight stay was to give Anya chemo that she recieves via IV through the port in her chest. This particular chemo can only remain in the body for a short time or it will cause liver/kidney damage so she has to be monitored in the hospital and submit all of her urine for tests to demonstrate that she is passing the chemo. Anya is holding up EXTREMELY WELL. I spent the day with her in the hospital before Anna relieved me around 8pm and Anya was cheerful and energetic the whole day. Which is more than I can say for myself! I caught a nap while Anya painted with a lady from the playroom. Anya is quite a little charmer with all of the staff and interacts very well with them. We spent the day watching TV, reading books, playing and talking in her room, playing in the playroom, walking the halls and looking at the two aquariums on her floor. Anya's spirits are high and she continues to trust that God will heal her. We continue to be blessed by all of the prayers and concern that go out to us. I am here this morning with Isaiah and Esther enjoying some downtime around the house. Here are a list of thanksgivings and ongoing requests for all of you who are praying:
- God continues to answer a lot of "little" prayers and we sense His hand and direction often although it is sometimes difficult for Anna and me to maintain a vibrant connection with God in the midst of the pain, confusion, busyness, etc. that characterize our current situation.
- One such "little miracle" was the disappearance of Anya's fever Friday night. We got conflicting readings from one thermometer so we tried another one and got the same reading of 100.5 from her underarm and under her tongue. However, when she was examined just one hour later by the nurse in the ER she had no fever at all and no other signs of infection.
- Another "small miracle" has been Anya's blood counts. Her white cell count and her absolute neutrophil count have both been high, allowing treatment to progress unimpeded throughout the first month of the Consolidation phase. It has also allowed her to attend church a few times, have freinds over and go into public places such as the library. While the doctors are not baffled by the high counts they are very pleased and consider Anya to be doing very well for her stage of treatment. Yesterday one of her doctors called her their "star patient".
- All of our children have been such a blessing to us with their joy, energy and love. We cannot imagine the difficulty of this situation if we did not have each other. We are also so grateful for the love and support of so many family members and freinds from across the country.
- I have been able to visit our home in KC a couple times and am planning another trip in mid October. Our church family there has been so generous and supportive of us and we thank God for them.

- Complete healing for Anya.
- That we would be a light and witness to the medical staff.
- That Anna and I would find more time to spend in prayer and Scripture reading and that God would bless those efforts with spiritual growth and strength.
- That God would richly bless all those who have been a blessing to us.

P.S. We're also thankful that Isaiah and Esther continue to learn and grow. Zeek is rolling from his back to his stomach frequently these days and Esther asked to go potty...and actually went! for the first time yesterday morning.

Sunday, September 16, 2007

Friday Night ER Visit

Last night Anya complained of a headache so we took her temperature as a precaution against masking a fever before giving her Tylonol. She had a fever of 100.5 so we called her doctor who requested we take Anya to the emergency room. At the emergency room they took her vitals & did blood work.

The ER doctors did not detect any infection and her blood counts were in good shape so they sent her home at 11pm. The doctors are also doing a culture on her blood and if it comes back clear they will assume the fever is a side effect of the chemo. However if the culture comes back with growth, Anya will probably have to return to the hospital for treatment and her chemo will have to be delayed.

So we are asking God to cause the culture to come back clear and for Anya's fever to disappear.

Tuesday, September 11, 2007

Tuesday Update

Anya left with Israel about an hour ago to go to the hospital for her scheduled sedated spinal tap. She was fine with visiting the hospital but she was NOT fine with having to skip breakfast. But how many of US would be? :)

After receiving the good news that Anya's counts have rebounded she has been able to visit two church services & to get her pictures taken with Esther and Isaiah at JC Penney. We thank God that she has been well enough to get out of the house.

Overall Anya continues to feel alright. The past several days she has had some more headaches, stomach aches, and times when she just doesn't feel well. But we are still thankful things aren't much worse. And the rash has all but disappeared so I imagine the doctors will continue to use the Peg-Asparaginase. Praise God!

Friday, September 7, 2007

Stages of Treatment

In case it hasn't been clear in our blogs I wanted to give some information concerning Anya's treatment plan.

Anya will have three stages of chemotherapy treatment by the time she is finished: induction, consolidation, & maintenance. She is currently in consolidation and will be for about the next six months. Right now they are focusing on her nervous system (intrathecal chemotherapy) - hence the weekly spinal taps.

When Anya gets a spinal tap the doctor pulls fluid out to check for leukemia cells and pushes in a chemotherapy drug. Thankfully, thus far Anya has been leukemia free in her nervous system. This is one of the factors that has put her in a standard risk category. (According to the American Cancer Society, someone in the standard risk category has a 65-85% chance of cure.)

When consolidation is complete, Anya will begin the maintenance phase. It is my understanding that it will last for two years and will require treatment a couple days a month.

Anya is now in remission, meaning less than 5% of her cells are leukemia cells. If she would not have reached remission by the fourth week she would be considered "high risk" which brings with it higher doses of drugs and other treatment (and a lower overall chance of cure).

The doctors do not forsee that Anya will need a bone marrow transplant. Transplants are reserved for patients that are not likely to reach long-term remission with chemotherapy alone. They also do not expect that Anya will need radiation therapy. We praise God for this because radiation therapy can cause problems with growth & mental development in children.

Hope this overview helps answer some questions. If you have more, please feel free to ask!

Sources: and (and of course, our wonderful doctors at St. Vincent Medical Center)


One more word about the rash: Anya's doctor said that she was unsure of the cause of the rash. She assumes that it is either an allergic reaction to one of her chemo drugs (Peg-Asparaginase) or an allergic reaction to something in the home like laundry detergent or soap. She hopes that it is the latter because if Anya is allergic to Peg-Asparaginase they will have to discontinue its use and the replacement drug is expensive and difficult to obtain. The replacement is only produced in France and of the handful of children she has treated that needed it only one of them were able to get it.

PS. Anya just woke up and I asked if anything was bothering her. She said that she was sleepy but that it was probably because she "took a long time resting". :) I love her optimism!

Friday Update

Yesterday Anya was sleepy and developed a rash on her legs. We contacted Anya's nurse and she suggested that we keep an eye on the rash and take her to the ER if it worsened. She also asked that we come in today for bloodwork for a CBC (complete blood count).

Fortunately the rash did not get worse so she just had to visit the clinic this morning. In order to do the bloodwork the nurse only had to poke Anya's finger. We are grateful that they didn't need much blood in order to run the labs but strangely it seems like the poke is more traumatic for Anya than when they access her port! Israel said that Anya cried from the minute the nurse walked in the door until they left the room.

While obviously the poke wasn't any fun for Anya we are thankful to know that Anya's blood counts have recovered some from the chemo. She now has an ANC (absolute neutrophil count) of 2.8 which is within the normal range*! This means we are free to take her in public as long as there are no noticeably sick people around her! Of course, we will still take precaution because anyone can contract an infection and for Anya an infection means an admit to the hospital and postponing chemo. But we are thrilled that she can attend a church service or visit the library.

Right now Anya is taking a nap and has been asleep for two hours. Until yesterday she seemed to be experiencing very few side effects from the chemo medications but she has become sleepy, mildly fussy, has an achy jaw and stomach, and constipated. But today the doctor said that all of this is normal and reaffirmed that it could be much worse.

*Neutrophils are a type of white blood cell that fight infection. Normal is considered between 1.5 and 8.0 and risk of infection increases when the number of neutrophils drop below this number - called neutropenia. If the number of neutrophils drop below .5 the risk for infection is especially high.

Wednesday, September 5, 2007

Happy Birthday!

Today is Anya's fourth birthday! We are planning to celebrate tomorrow evening at my parents' house with cupcakes with ice cream and presents. Of course it will only be our family for the party to avoid more risk for infection. But it will be a joyous celebration; we are so thankful that God has given us these four wonderful years with her!

Tuesday, September 4, 2007

Tuesday Spinal

Anya left a few minutes ago for her weekly spinal tap. She will be getting a different drug this week than last week and she will also get a shot with another kind of chemotherapy. We are praying that Anya's body would react as well to these drugs as the ones she was was taking the past few weeks.

She was such a trooper this morning - not complaining too much about not being able to eat and not crying when it was time to leave. We praise God for the dramatic change we've seen in her since the beginning of treatment.

Monday, September 3, 2007

Family News

As those of you in Kansas City already know, Israel went back to KC for a visit this weekend. He loved seeing everyone and attending Scott and Summer Taylor's wedding on Saturday evening. He was blessed by all the hugs, tears, & kind words that were shared with him concerning Anya and our family. We appreciate you all!

Many of you have expressed interest in how the kids are growing up and changing so I'll share a few things here: Anya has started writing her letters and she loves playing outside. Esther is such a talker! She will be two in a few weeks and talks all day long, usually in complete sentences. She is as sweet as ever and quite the jokester. Isaiah is now almost five months old. He is very content, smiley, and lovable. He just started spending time in an exersaucer and is around 15 pounds!

More Pictures