Esther & Isaiah - Our Other Little Fighters

While this blog was mainly created to keep everyone updated on Anya's condition, it has also become a great place for us to document our thoughts and feelings throughout this difficult journey. Since leukemia takes a toll on the whole family I'd like to give a little update on Esther & Isaiah specifically.

In the previous post I mentioned that Isaiah wasn't feeling well. He is now teething and fighting whatever "bug" got him this time. He is still having trouble sleeping and cries after he coughs. He is pretty needy and is sleeping more than usual.

The day following the last post Esther had a fever and cough. Since that time she developed a moderate to severe case of croup and has been put on oral steroids and albuterol treatments. She has difficulty sleeping at night and has a harsh raspy sound when she breathes. She has lost her appetite and along with it a few pounds.

My heart just breaks for Esther. She is such a tender-hearted ball of energy that has been through a lot these past few months, just like the rest of us. But unlike the rest of us she doesn't have the ability to communicate her feelings or understand why Anya is crying and hurting. And she usually doesn't get the extra attention and special treats that Anya often does. Yet she still has to stay couped up in the house like the rest of us.

So many of you have committed to praying for Anya's health and for our family in general. Thank you. Would some of you also "stand in the gap" with us specifically for little Esther & Isaiah? They could use a touch from the Healer and Comforter.

The past few nights Isaiah has had trouble sleeping and since Israel was leaving for Kansas City, we decided to take Isaiah to the doctor to check for an ear infection. Things didn't look bad at the time, but the doctor decided to give us an antibiotic, just in case things worsened. And am I thankful that she did! He got a fever, decreased appetite, and looked just plain miserable (not to mention that he is still not sleeping well). So we started the antiobiotic and he is improving.

Meanwhile, Anya is also improving day by day. Her moods are evened out, she is losing weight, her bottom is healing, and her appetite is returning to normal. She still has weight to lose and her bottom needs to get better but we are thankful for the improvements.

Anya went in for a checkup today and the doctor is happy with her progress. Anya has a cough but no fever and the doc said her lungs are clear! Yeah! Anya will return to the clinic on Wednesday for blood work because they'd like to start her next round of chemo on Thursday.

Just a note: A precious little girl from Arizona, who has fought bone marrow cancer in the past, wrote Anya a letter a few months ago to encourage her. It was really quite tender. We just received word that this little girl has relapsed. As a mom with a child that is remission and looking forward to the close of treatment, I can say that the possibility of relapse is frightening. If you are reading this blog, would you please take a moment to pray for this little girl and her family? Please pray that God would be their strength and that she would have a speedy healing.

Tuesday

Well, today was supposed to be Anya's overnight in the hospital but the clinic visit yesterday revealed that her counts (especially her ANC) are too low for her to recieve the meds they wanted to give her during the overnight stay. The doctors aren't overly concerned about the low counts, we all just wished they had recovered faster so that this overnight admit would not be delayed. We'll check counts again Friday and see if Anya is ready for the admit early next week.
The big concern with her ANC being low is that she is more susceptible to infection. So we're back to really limiting our exposure to people and keeping Anya couped up here at the house where we try to wash hands constantly and keep Anya as safe as possible. The low ANC also makes Anya feel tired, sickly, and a little grumpy, but she's been a trooper and it's still an improvement from when she was on the steroids. She's been pretty cheerful this morning and is getting more and more active. Last night she was comfortable staying with Anna's mom so we left the kids with her and Anna and I had a much needed dinner date. Anya's bottom is steadily improving from the various meds and for the most part she is a lot more comfortable throughout the day. She has a little cough and a very low grade fever this morning but the nurse just encouraged us to get her rest and fluids. As long as there aren't more serious symptoms or a higher fever we won't need to take her in to the hospital.
With these latest developments my intentions of returning to KC for the weekend are up in the air. I had intended to begin the drive late Wednesday afternoon. We'll go ahead and prepare like I'm still going and then if Anya deteriorates at all between now and then I'll need to postpone the trip. Of course your prayers are greatly appreciated. God is good and faithful and we continue to put our trust in Him.

So much for a week without meds!

We were supposed to be off of medication this week but after an unplanned clinic visit this morning Anya is now on four medications. If you recall when Anya was on the steroids she experienced constipation that we treated with several meds and prune juice. Once she started going again she went several times a day (because of her increased food consumption) and this irritated her poor little bottom. She has a rash, irritation, and a few small lesions, all of which are extremely painful when she uses the potty and potentially very dangerous because open sores in the diaper area can quickly lead to blood-borne infections that could land Anya in the hospital and possibly compromise her port. The doctors are taking the risk seriously and have placed Anya on meds that should treat the problem and guard against infection. Three of the meds are liquids taken orally and the fourth is a cream for her bottom, used in addition to the diaper rash cream we've been using. It is frustrating and embarrasing for Anya to have to use this stuff as she was completely potty trained during the day and only wet herself at night prior to going onto the steroids. It is very difficult for her emotionally to have to deal with getting her diapers changed, especially when they're poopy.
Despite all of this she continues to improve as the steroids work their way out of her system. Her moods have become brighter and more stable, although they are still prone to swing on occasion and she cries much easier than normal. Her appetite for food has decreased significantly, but she still wants several snacks between each meal. Her mobility/activity has increased and she has begun to lose the weight and water retention, although this process will take a few weeks. A few days ago she looked nine months pregnant, now it is closer to seven or eight.
In the midst of all of this we still have many moments that give us cause for reflection on our blessings and opportunities to laugh and experience joy. I'll share just a few stories with you before I go.
As a family we celebrate Hanukkah as a way of remembering God's deliverance and salvation of His covenant people throughout history, especially in the salvation that is available in Jesus Christ. We started celebrating about a month late because of Anya's treatment, but lit the third candle on the menorah tonight. Each night we tell a different story of God's deliverance of His people. Tonight I asked the kids if they wanted to tell the story and Anya said that she would tell it. She chose the story of David and Goliath and talked about how God gave David the strength to kill Goliath. She is such a thoughtful little girl with incredible spiritual sensitivity. She teaches and blesses us frequently.
Something else that happened tonight gave us a much needed dose of laughter. Anna has taught Anya that part of being a little lady means not using certain words that other people, including her father, use. Among the taboo words is "butt", which Anya and Anna replace with "bottom". Well, we customarily use Desitin to treat the kids' diaper rash, but the doctor recommended that for Anya's situation we switch to another product with the unlikely moniker of "Boudreaux's Butt Paste". As Anna was applying it to Anya today Anya just lay there laughing and saying "Boudreaux's Butt Paste". Anna and I just sat and laughed along with her as she kept repeating the name and blushing and laughing. Anna asked her and Anya confirmed that a great deal of the humor came from the fun of getting to say the word "butt" over and over!
Last story for the night. A game that I play with the girls sometimes is to sit them on my lap and pretend that I'm interrogating them (which always gets a good laugh from them). The questions I ask are usually basic personal and family information (e.g. What's your mommy's name?) or ridiculous questions with no real answers (e.g. What noise does red make?). Well, I was interrogating Esther and started asking her questions about her dad. When I asked her, "Does your daddy have a job?" She said "yes". I said, "What is his job?" and she replied, "He does the laundry." Anya overheard and said, "Yeah, he does the laundry and cooks and does dishes" and laughed because, unlike Esther, she knew that wasn't my "real" job. She then explained to Esther that I actually pastor a church in Kansas City. I was thankful for the reminder myself, since a lot of days I feel like all I do is cooking, cleaning and laundry! Being an at home caregiver is an incredibly high calling that requires more humility, patience, courage, energy, creativity, and determination than I personally have. I have nothing but respect and appreciation for my wife and all the ladies (and the occasional dad) out there who devote themselves entirely to the ministry of the home.

Family Pictures

Isaiah is still all smiles & full of love. He can sit up on his own and has started crawling!

Esther is full of energy! She tells us, "Me love chocolate" and "Me want to play"!

#1 One thing that has helped Anya to take her medicine is for us to "take them with her".
#2 Anya gets really sleepy at night and fell asleep before I could give her the medicine.
#3 Here is the a picture of Anya taken yesterday, on her first day off steroids.
#4 Anya visits a clinic where they give her infusions of antibiotics or chemo in a playroom with comfy chairs and televisions.

Done With Steroids!

Victory...Anya has now finished her steroids! As the doctors predicted, she is still feeling the effects from them. But we are hoping that she will be feeling better by tomorrow or the next day. She has already started to smile more, we are just waiting for her to have more energy, a decrease in appetite and to be able to sleep through the night.

Anya went in to the clinic yesterday for a preventative antibiotic but other than that she will have a break from treatment until early next week. At that time she will have blood work and if her counts are high enough she will be admitted for an overnight visit for chemotherapy. The drug they will give her can cause immediate complications so they like to keep her in the hospital to monitor her vitals, etc.

She also has developed some complications as a result of her digestive problems. It is very painful for her to use the restroom and the doctor is concerned about infection. Please pray for her healing in this area and for protection from infection.

Heartbreaking

Hmmm...as I lay in bed with Anya a few minutes ago I wished I could communicate what it is like to have a sick child, what it is like to watch your child moan, whimper, and cry throughout the day and night for weeks on end. I wish I was a better writer so that I could capture in a few words the experiences we have with her, watching her suffer. And while I continue to remind myself that things could be much worse, that she could be gone or that could be sicker, for longer, it is still heartbreaking to see my daughter suffer so.

There have been times in these past few weeks when Anya was so constipated that all she could do was wander around the room, waddling and moaning. Other times she has had diarrhea until her little bottom was raw and she cried from the pain and from the embarrassment of having gone to the bathroom in her pants again. She often lays around for hours throughout the day exhausted and weak yet wakes two or three times every night, asking for food and movies, because she cannot sleep. She has gained a lot of weight, increasing a couple of clothing sizes. She has difficulty completing simple tasks like climbing up on the couch because she is so bloated. Just minutes ago she woke up, calling for me. When I lay down with her she asked for a story and as I spoke she whimpered and shook until she fell back asleep. And all of this is caused by the drugs that we expect to save her life.

Yes, things are better than they were in the beginning. And yes, things are better than they could be but we still mourn over the pain our little girl must endure and desperately pray for more of God's mercy on her young life.

Only five doses left!

After taking her steroid dose this morning we let Anya know that she only has five doses left (tonight, and morning and night doses this weekend). I'm not sure who needed the encouragment more, her or us!
The past few weeks have been pretty grueling for everyone as the steroids have taken their toll on Anya's emotions and appetite. She is hungry almost constantly and her moods swing from playful to melancholy to fussing and crying in a matter of seconds. The steroids cause water retention and weight gain (because of increased appetite and decreased activity) so we have tried to limit Anya's food consumption as much as possible. However, "limiting" her means making her wait 30-45 minutes between refrigerator raids! It honestly seems as though she would eat without stopping if it weren't for our limitations. This resulted in some early trouble with constipation but we've got her regular again which has helped ease some of her discomfort. She still moves around and hurts in ways similar to a woman in her 9th month of pregnancy and manages relatively little activity and few smiles throughout the day.
But we are THANKFUL for the smiles and activity when they come and are glad that she seems to be resting better at night and throughout the day. We are also grateful that we have been spared from what could have been a much harder three weeks. The doctors have warned us repeatedly that this three week stage (Delayed Intensification) is often the hardest part of the treatment. While it has been very difficult and demanding it has not been nearly as hard as our first eight weeks. We are blessed that God has relieved her suffering and continue to trust and seek Him in the midst of this situation. We are definitely looking forward to next week when she will have a seven day break from medication and should get back to her own self and size again.
It's amazing for us to think that this ordeal has only been going on for seven months. It seems like much longer to us, our extended family, and our church family back in KC. We hope to be reunited with them very soon, probably in the neighborhood of March. I (Israel) intend to make one more solo trip home before our family goes back together and that trip should take place sometime in the next three weeks. I plan to drive in our minivan loaded down with stuff that we've accumulated here in order to not have to rent a moving truck when we go back as a family. Please continue to keep us and all those affected by our situation in your prayers. And please be sure to thank God for His provision and care for us, as we are unable to thank Him enough ourselves.