Journal History
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Tuesday, May 20, 2008 0:13 AM CDT
Today is Chloe's 5 year re-birthday anniversary. What a blessing this child is to us! She continues in excellent health.
She is in the process of getting insurance approval for growth hormone. We'll keep praying for the restoration of her pituitary gland. Meantime, she needs to catch up on her growth.
Thank you for checking in again on Chloe.
Trey
Tuesday, September 4, 2007 10:40 PM CDT
Hi friends. Today was Chloe's seventh birthday! She is as excited about life as ever having begun first grade.
Some of you have asked about Chloe's wish. Yes. She got her pool a year ago. It is a 24 foot above ground pool. This coming weekend the deck will be built too with the help of friends and volunteers from the community.
I'm sorry it's been so long since we have updated her page.
Chloe's health is great. Her growth has been an issue. She was in the 75th to 80th percentile for height at diagnosis, and now she is at the 11th percentile. Growth hormones may be an option soon.
Chloe's eldest two sisters are both in college studying nursing. There interest in medicine was sparked through Chloe's illness. We're very thankful for all of you who have helped us with your prayers and medical care over the course of her treatment. I put a new photo up today, and will do it again soon.
Trey
Monday, May 1, 2006 0:37 AM CDT
Chloe participated in her first "Relay for Life" last week. During the survivor lap, she walked with a group of about 25 mostly elderly people who had survived cancer. She was the only one under 18 in that group. As you might imagine, she loved the experience and thrived on the attention.
There is no definite news on her make a wish yet, but it may happen very soon, so check back with us.
Three years ago, we were just arriving in San Antonio to prepare for transplant. We're so thankful to still have Chloe to hold and care for.
After we had been in San Antonio a few days, were were sitting in a huge lobby during her first radiation appointment. In the background, there was a TV playing a movie on a cable station. All of a sudden we heard a lady on the movie shouting, "It's a perfect match! It's a perfect match!"
Yes, the movie was talking about a perfect match for a stem cell transplant. Michelle and I just looked at each other. Another gentle sign from the Father that He was with us.
Thank you for checking in.
Sunday, November 13, 2005 8:43 PM CST
Thank you for checking in. How is Chloe? She is doing fantastic!
She has really entered the little girl stage; no longer a toddler. She missed the kindergarten cutoff age by a few weeks, so Michelle has been teaching her at home. She's learning to read!
At her last checkup in July, everything was great. As some of you know, we have been concerned about her growth. Well, she's growing now, thank God! Her blood tests showed normal amounts of the growth hormone. We regard that as a miracle, since the radiation doctor told us the radiation would wipe out her pituatary (sp?) gland.
As you might be able to tell from her photo, Chloe is a joy to be around. She seems to be aware of how special she is. At a recent get together at our house, she spotted a young man she wasn't sure she knew. She went up to him and asked "Have you ever met me?". That's classic Chloe. She wants people to have the honor of knowning her.
Cancer was *so* hard, but our time together now is all the sweeter because of what we've been through.
As the dear Corrie Ten Boom said, "There is no pit so deep that God is not deeper still".
May God bless you and help you, whether you are in the pit or on the mountaintop.
Trey
Thursday, February 10, 2005 3:21 PM CST
This month is the anniversary of Chloe's relapse. Last years anniversary was traumatic. This year, while the memories are still painful, there is a settledness about all she's been through.
The more I understand about the world of Leukemia, the more I marvel that she made it through all she has, and as well as she has. When she relapsed two years ago, it was bad, really bad. Our oncologist had moved away and we were left without one. We were told, "A monkey can follow a protocol. No reason to transfer to a facility further from home."
I've never seen anyone rithe in so much pain! She always had a lot of pain coming off those horrible high dose steroid pulses. High dose meaning 70 mg. prednisone per day, and she was only 2 years old! It had just been increased so we thought the increased pain was from that, and the clinic called in a couple of different pain meds for her. But Monday morning the 17th, she awoke not being able to move, let alone walk, and was not breathing well. Her heart rate was accelerated. We went immediately to our pediatrician in town. He sent us immediately to Columbia, where she was receiving treatment.
Morphine didn't touch her pain. She was on oxygen. They couldn't get a good draw on a bone marrow aspirate. There were "very immature cells" in her peripheral blood stream. I thought she had a virus (explaining the immature cells) and the pain being from the steroids. Denial? I don't know.
Monday night we made the decision to transfer to Kansas City. It took another two days for insurance to approve the flight! Meanwhile, she grew much worse. No sleep, unbelievable pain, and not breathing well.
Wednesday night, the 19th, I flew with her to Children's Mercy Hospital, after insisting that she would NOT go without one of her parents, being only 2 years old and already very traumatized.
Thursday morning, the 20th, Chloe endured one of the worst procedures of the whole two years; a spinal tap without sedation. They tried Versed which they presumed would work with the Morphine she was already on. They gave her as much as they dared, but she didn't go out and they were in a hurry. She was already in so much pain that just touching her was excruciating. It took three of us to hold her down. The doctor asked if we wanted him to do a BMA too, but we emphaticly declined! When it was over, Trey and I and the nurse were all crying. She finally slept for several hours in my arms.
The O.R. could not be scheduled till the following week in order to do the bone marrow aspirate under proper sedation. Friday, Saturday, Sunday and Monday we waited while she suffered. How she suffered! Tuesday, the 25th, the BMA was done as well as a bone marrow biopsy.
Late that afternoon the doctor wanted to talk with us in the conference room. Why do they make those rooms so small? The news is never good when they want to talk in one of those rooms. You already feel like you are in a tunnel, and those small rooms just magnify the feeling of having the life squashed out of you.
"I'm sorry. Chloe has relapsed."
"Could there be a mistake?"
Blank stare. He shakes his head.
Alright. So it was a dumb question. I had to ask.
Her marrow was so packed with Leukemia they couldn't get a good draw, but the biopsy was conclusive.
Trey knelt at his chair and wept and prayed. I held it in, only a few tears making their way down my face. But I had to get out of there! I had to get back to my baby. I had to go errupt alone. That much pain should not be unleashed in the company of others.
After checking on Chloe, I ducked into the bathroom to bawl. I muffled as best I could. The child life worker who had been sitting with Chloe came in and patted me on the back. Outwardly I ignored her. Inwardly I screamed, "Get out of here! I want to be ALONE! That's why I'm in the bathroom! I don't even know you!!!!"
That was Tuesday, Feb. 25th, 2003. I must say that by then the worst was over, though we didn't know it at the time. The future prospect of transplant was terrifying. But she has never been that sick since, even through transplant. She began to feel so much better once intense chemo was given.
After 4 weeks of being separated, our family had spent a few days together in Kansas City over Spring Break. Chloe, who had withdrawn into depression, began to bounce back while with her brothers and sisters. After 5 weeks in the hospital, we begged to take her home, and were cautiously released. We knew after those few days together that wherever we went for transplant, we would all go together- all nine of us.
We did. And lived happily ever after!
This wasn't written for anyone else. It was theraputic. I just needed to get those memories out of my head even though words don't begin to capture the pain and trauma we all touched.
Anyway, thanks for reading if you made it this far. Chloe is doing amazingly well. She is such a joy! At just four years old, she always seems to know the right thing to say at the right time. She just has a way a sneaking right into everyones hearts. We are so blessed! Thank you, Jesus!
Eternally grateful,
michelle
Monday, January 3, 2005 5:11 PM CST
Happy New Year to Everyone!
We had been concerned that Chloe wasn't growing, but she is. In the last few months she may have grown up to 1/2 and inch. Small victories like that are so exciting given the potential for damage that pre-transplant conditioning can cause. We were told that she *would* get cataracts, but to date there is no sign of them. Thank you, Lord! So far all thyroid functions are normal as well.
That said, we continue to pray for her little brain. There isn't much protection on those little neurons at 2.8 years of age and she got a good dose of cranial radiation. Every now and then it seems that she struggles to grasp things. But with this also, we put our trust in Him. He knows the plans He has for her...for good and not harm...to give her a future and a hope! (Jer.29:11)
Chloe does all the normal kind of kid things...like cutting her own hair. Just when it had grown out nicely and Mommy was able to actually do something with it, she chopped it down to the nubs in the front. Oh well, proves she's normal, right? Five of the seven kids have now done it.
The rest of the children are well. Bethany just turned 18 and will graduate this year. She and Mary (16) are both interested in the medical field so we'll see how all that turns out. I don't know if either of them would have thought about medicine before all this happened with Chloe. It's interesting how God uses ALL things to work together for good to those who love Him.
Thank you for checking on our girl. She continues to be a delight. Life just wouldn't be the same without her. Thank you, Jesus!!
Sunday, November 14, 2004 8:13 PM CST
Little Chloe is getting big. The photo above is Chloe and her little brother Daniel, who saved her life with his cord blood.
Chloe just had a bone age test. She is 4 years and 2 months old. Her bone age showed 3 years 3 months. We're not really sure what that means, other than she may be a little behind. The radiation can cause growth problems.
She is really enjoying her young life. She is going to K4 three days a week. She is such a social butterfly. She lights up the room wherever she goes. Of course, she can be a bear too! Michelle says that being a fighter is part of her nature. That fight showed itself in being a super patient when she was battling cancer. Now it can show itself in yelling at little brother and big brothers, etc.
A couple of weeks ago, I asked Chloe about her hair. I said, "Chloe, don't you like having hair?". Her reply: "Of course I have hair, Daddy. I'm a girl!". I was a little surprised at her answer. But it told me that cancer is becoming a distant memory for her. Thank God!
Our family just moved to a small town 24 miles from our hometown of Kirksville. Some great friends are letting us use their house while our house is being built. We will probably be here 3 or 4 months.
Look for updated links below.
Trey
Wednesday, September 15, 2004 2:06 PM CDT
Now that Chloe is a "big girl" at the age of four, she is going to "school" two days a week! As the youngest in her class, she is challenged and stimulated accademically, but she especially loves the social aspects!
The rest of the week is spent bouncing around town with mom and Daniel as we are constantly talking with our builder about this or that for the new house. It's exciting watching it "grow" out of the ground!
When mom teaches her Language Arts and Speech and Drama classes for the big kids, Chloe and Daniel get to spend time with friends, Aunt Sherry and Grandma. So every day is filled with adventure and Chloe LOVES adventure!
Still nothing on the "Wish front" with pools and pontoon boats not being granted. We'll just wait things out to see what wish emerges next.
Thanks for stoping by to check on our vivacious girl. We appreciate all the prayers on her behalf. God is good!!
michelle
Monday, August 30, 2004 1:34 PM CDT
Dear friends,
Thank you for checking in on Chloe. Her fourth birthday is Saturday, September 4. As you can see from her photo above, she is doing great. A couple of weeks ago she had her hair done in pigtails for the first time.
She has no doctor appointments until November, when she will have another neuro-psych evaluation.
The rest of the family is doing fine. Bethany is beginning her senior year of high school, Mary, junior. Amy is in seventh grade, Josiah fifth, Ben first.
We are in the process of moving our big family out of our home of seven years into a rental while our new house is being built. Michelle will be teaching speech and drama for high school, and junior high language arts, while Trey will be teaching social science to juniors and seniors.This is a very busy time for us. Thankfully, Chloe's health is not a concern!
Tuesday, July 13, 2004 4:20 PM CDT
Last week Chloe had her port removed. It's been a good friend for a year and a half. She also had an MRI of her brain. The report said that every area of her brain looks normal, "without incidence." I like that! We continue to stimulate her mentally as much as possible. Fortunately, she is natural born thinker, so that helps, I'm sure.
A couple of days ago, we had another milestone. A fever of 102 and no hospital admit. They just said, "Give her some Tylenol." Okay, that's what you do with healthy kids, right? By the next afternoon, she was feeling fine again.
Thanks for checking in. All continues to go well and we are so grateful! God is good.
michelle
Thursday, May 13, 2004 3:32 PM CDT
Little Miss Chloe had her one-year post transplant tests this week. So far she is checking out just great!
One big one is that she has no signs of cataracts. The eyes are particularly sensitive to radiation and we were told she *would* (not might) get cataracts. During radiation therapy one year ago, her eyes were especially targeted since she had a mass there when she was first diagnosed. Therefore, she had no eye shielding what so ever from the potentially damaging rays. The ophthalmologist seemed to think that if she were going to get them, they would be there by now. This I consider to be a miracle and we are thanking God!
After the rest of the test results come back, we will schedule a time for port removal! Sounds like the end of an era to me. Check-ups will be every six months now for a while. Leukemia is getting further and further from our minds.
Having said that, there is a certain amount of post-traumatic stress we experience from time to time. As anniversaries rolls around, memories surface and with them the corresponding emotions. In February and March we revisited some of the anguish we experienced last year when Chloe relapsed and was in such horrendous pain. In April, one year ago, Trey and I wrestled through the agonizing decision over a transplant doctor, treatment plan and facility. Just a couple of short weeks from that decision, we all relocated to San Antonio, Tx., one thousand miles from home, to begin what we could only hope and pray would be the healing process.
Other anniversaries bring thoughts of God’s goodness and sovereignty. Our little Daniel is now the age Chloe was when she got sick exactly two years ago. I was six months pregnant at the time. I “happened” to read something about cord blood transplants, which I had never heard of, and inquired about storing our baby’s cord blood. It was all arranged. He was born three months later. Not until she relapsed did we know that those would-have-been-wasted stem cells were a perfect match for Chloe and would be used to save her life. June 6 is Chloe’s diagnosis anniversary. This year it is also National Cancer Survivor Day!
As you have prayed for us in the past, thank God with us now. We aren’t claiming future victory. We are simply reveling in the grace that we see looking back and the triumph of today. You are joyfully invited to join the celebration!
michelle
Tuesday, April 6, 2004 4:32 PM CDT
Hi everyone,
Thought I would send a Chloe update since it's been so long. The reason is that there isn't much to report. Normal life is sort of boring and you can believe I'm not complaining about that!
On the 20th of next month it will have been one whole year since Chloe's transplant. She has adjusted back to life as *one of* our seven children in almost every respect although she still carries an aire of "specialness" about her. But maybe that's just the way I see her.
Several months ago she would be very clingy and shy at church and terrified to go to her class without one of us. Now she begs to go. She greets everyone like they are her best friend regardless of whether she has ever laid eyes on them.
She is still pretty bossy, but I don't know if that is a Chloe trait or a result of being waited on hand and foot and most requests being granted her highness for most of her 3 1/2 years. At any rate, we are working on that one.
Her counts, which are only checked once a month now, continue in normal range with the exception of her RBC running just a hair below. Occasionally she gets a little GVHD rash which the steroid cream clears right up. She will have a whole battery of tests run next month. I'll let you know how it goes.
There are many still in the battle. Please pray for Spencer, Jacquelyn, and siblings Ashley and Ryan both with ALL.
Blessings,
michelle
Thursday, March 4, 2004 12:33 AM CST
Nine months and counting since transplant! Chloe is feeling great and continues to grow in spite of the radiation and high dose chemotherapy that were likely to stunt it.
Today she is 3 1/2 and spunkier than ever. She is a delight to everyone who knows her, especially her parents. First thing this morning she had on her ballerina outfit and danced around uninhibited, imitating her graceful older sister, Amy. Most days she and her brothers have great adventures on their "pontoon boat" made up of blankets and pillows spread all over the living room floor. Anything off the blankets is "water". They take turns falling in and saving each other. They fish for the most amazing creatures, and eat them, of course! Her pontoon wish isn't looking likely, so we try to change the subject when she asks about it. Benjamin is teaching her to paint with watercolors. They create Veggie Tale masterpieces displayed proudly on the fridge door. She is also working hard on learning her alphabet. She recites, "A is for apple, B is for bell, C is for CHLOE!!" No lack of self-esteem there!
These children and their families need prayer.
Jacquelyn just had a cord blood transplant. These are critical days for her.
Five-year-old Blake just relapsed after a year and half off treatment.
Spencer, who just turned 3, will need a transplant soon after relapsing only a few months into treatment.
Thank you for checking on Chloe and keeping her and these other children in your prayers.
God's love and mine,
michelle
Wednesday, January 21, 2004 12:25 AM CST
Hi everyone! Thanks for checking in on Chloe. Yesterday was the 8 month anniversary of her cord blood transplant. The doctors told us that if she went 6 - 8 months without relapse, that would be good. So, here we are, cautiously optimistic. Next big mile-stone will be the two-year mark. Besides an occasional slight flare-up of Graft vs. Host Disease of the skin, you would never know she's been to the brink of death and back.
Her blood counts, as of last week, look great. Other than once-a-month CBC's, she doesn't need a check up till May. You can't imagine how weird that is after scheduling our whole life around doctor appointments, and hospital stays for the last year and a half.
Chloe's long-standing wish for a pontoon boat may come true after all. We've heard back from the wonderful people at Children's Wish Foundation and they are working hard to get her one. I absolutely can't wait to tell Chloe, but I don't dare until we know for sure. We'll have the video camera rolling when that announcement is made!
Chloe is enjoying having Benjamin home from Kindergarten this semester. As I do some school work with him, it is easy to include Chloe on a lower level and get some extra stimulation into that little brain. This is important to combat the late effects of the radiation required before transplant. Normally, children under 3 don't receive this treatment, but for Chloe at 2 1/2 with one last shot at beating this disease, it was not an option. So, long-term risks remain, but we fight on for the highest quality of life possible for our little trooper.
I'm sorry and sad to report that little Marcus lost his battle with leukemia last week. Please keep his heart-broken mother, Teresa, in your prayers.
Jacquelyn has gone to San Antonio for transplant. Please keep praying for it's success without incident. You can check on her at www.caringbridge.com/mo/jacquelyn.
Blessings,
michelle
Wednesday, January 7, 2004 5:10 PM CST
Happy 2004 everyone!!
We are back from our long Christmas trip. We had a great time with Grandparents, cousins and second cousins and...whatever. It was wonderful to be all together and healthy for the Holidays.
We don't update this page much anymore because there isn't anything to report on the Chloe front. No complaints here! She looks great, feels great and is learning how to be a "regular" three-year-old. That may take some time as she is naturally predisposed to a princess mentality, not to mention being the center of attention for a year and a half of her short life. But she's learning.
The rest of us are getting on with life again, too. Bethany is scouting out her future college possibilities, while saving from her after-school day care job. She’s very interested in pediatric medicine since spending so much time in the hospital with Chloe. Mary is also beginning to think about her future, possibly in social work or teaching. Amy is our one lone dancer now, and very talented. Josiah is doing well in his homeschool work. Benjamin is learning all kinds of kindergarten things and is especially good at reading. And little Daniel just keeps cutting new teeth all the time.
Trey and I will celebrate our 20th anniversary this month.
From the beginning of Chloe's illness, we determined to "stay married." We knew it would be easy to fall into a management-type relationship in times of overwhelming stress. It took more than a little effort, but with God's help, we did it. His grace has truly been, and will be sufficient for us.
As you pray for Chloe's continued health, please also remember Jacquelyn (11) who will head to transplant soon, Marcus (7) who has relapsed post transplant, and Charlotte (8) who has had severe neurological damage from chemo and radiation. These children need miracles.
Don't forget to sign the guest book.
Blessings on you,
michelle
Wednesday, December 17, 2003 8:26 PM CST
Christmas greetings to you!
Our family is gearing up for a big trip to spend the Holidays with out-of-town family! This is a first-ever trip of its kind for us, compliments of Mama and PopPop. Saturday we'll fly to Arizona to spend a few days with my cousins and 93 year-old grandmother. My girls are excited about spending a little time with cousins they rarely see. The boys are excited to be flying for the first time. We hope to drive the kids to the Grand Canyon while we are so close. Then we will fly on to Oregon where we will spend a whole week with my parents! Sounds glorious to me!
After fighting the flu for the past week, I think Daniel and Chloe are on the mend. Oddly enough, Daniel got the worst case of it with five days of fever, while Chloe had it pretty easy with less than 24 hours. So much for being immuno-compromised! I had the rest of us put on an anti-viral drug in hopes that everyone else would remain healthy for the trip and not carry the germs with us out of town. So far, so good.
I've been busy scrubbing down the house as it will be used as a "hotel" for out-of-town friends while we are gone. Besides, it's always nice to return home to a nice clean house when you've been away.
In our family, it's tradition every Christmas for each child to receive a tree ornament picked out especially for them. Today I found Chloe's. It's a little "snow baby" emerging from a wrapped Christmas box as if she is the gift itself. Truly "every good and perfect gift comes down from the Father." Chloe is a gift from God, given to us "once again" this year!
I love Christmas! The wonder of God, the Creator of the whole universe, loving us so much to send us His own Son, Jesus, overwhelms me. I feel my heart swell with emotion and awe and I just can't seem to fully express my gratitude and praise!
I hope you all experience the "wonder of His love" this Christmas!
michelle
Friday, December 12, 2003 7:52 PM CST
All nine of us piled into our suburban Monday and headed for Oklahoma City for Grandma Mary's funeral. We arrived Tuesday just ahead of the ice and snow!
Wednesday morning Chloe spiked a fever. We had instructions to take her to the ER so Trey dropped she and I off there and headed on to preach the funeral. After a couple of hours, she was dx. with influenza A and released. We were extremely thankful not to be locked up (admitted) so far from home!
We drove 8 hours through the night Weds. to arrive home at 4:00 AM Thursday. Today, other than sounding a little froggy, Chloe is doing fine. Hopefully, we got that over with for the season!
Thank you for checking on Chloe. As you pray, please also remember little Marcus who has recently relapsed after his August transplant. Doctors are offering little hope. He needs a miricle! www.caringbridge.org/mn/markie
Also, Jacquelyn has relapsed for the second time and is headed for transplant. www.caringbridge.org/mo/jacquelyn
We hope you have a wonderful Holiday Season. Take time to enjoy everyone you love and let them know it.
Blessings,
michelle
Friday, December 5, 2003 3:04 PM CST
Trey writes...Chloe is back home! She's feeling great. They let us leave Thursday night around 7:30. We arrived home at 11 p.m. Michelle had some minor surgery this morning at 6 a.m., plus...
My grandmother fell ill and passed away this morning at the Kirksville hospital. She was 85 years old, and one of the most merciful people I have ever known. We're grateful for her life, and that she had minimal suffering in her death. She was from Oklahoma City. We're currently making arrangements to get her body back there for the funeral. The plan is for me to be the minister at the funeral.
Please pray for our family during this time. Our immediate family is doing fine in Kirksville, but there are a lot of hurting people in Oklahoma City, including my grandmother's husband.
Thursday, December 4, 2003 3:38 PM CST
Chloe and dad are at the hospital in KC (Children's Mercy). A cold has been going through the family, and she was the last one to get it. Her temp. was over 100, and the transplant doctor in KC didn't want to take any chances. He said her immune system is still weak, even though it looks good on paper (blood counts...he didn't use the phrase "on paper"). So, we left home at 9:15 Wednesday night. We arrived at the hospital at 12:15.
Thankfully, she hasn't had a fever since we got here. Also, she's not on any IV fluids so she can get up and play and go to the bathroom without the usual ball and chain routine. If she doesn't have any more fever and the blood cultures remain clear, we should be able to go home Saturday.
This is the first time she's been inpatient since the beginning of July!
Thank you for checking in. I'm putting a new photo up of Chloe from Tuesday night's father / daughter banquet.
Trey
Saturday, November 22, 2003 1:59 PM CST
I read something years ago in a devotional that a friend of mine wrote. It likened a thankful heart to the foot pedal of a piano. Just the way the pedal sustains the musical notes played on a piano, a thankful heart "sustains" the goodness of God in our lives. It enables us to linger, enjoy and experience His goodness for a prolonged period of time. This has been a helpful insight to me, appropriate for any time of year, and any "season" of life.
Our family certainly has good reason for thanksgiving this year. Chloe had her 6-month post-transplant anniversary on the 20th. She continues to do amazingly well and besides the extra short hair, you wouldn't know her from any other three-year-old. She hasn't quite caught on to the fact that her wish is no longer our command when it comes to food. Now, all the regular rules apply even though I have to giggle as she whines, "But, Mommy, I'm hungry for that!"
In contrast to the heavy hearts we carried at this time last year, we are full of hope and joy. Last Holiday Season it took all my energy to do the simplest tasks and life seemed to move is slow motion. It required such effort then to be happy. So much so that we put up our Christmas tree in October in hope that it would help bring some cheer into the house. I am marveling at the difference this year! The Christmas tree isn’t up, but everyone is peacefully joyful! We are looking forward to Thanksgiving Day when all the family, and then some, will converge at our house. I actually have the energy to host the feast! This really is amazing!
Thank you for stopping by to check on Chloe and thanks more so for those of you who faithfully pray for our sweet girl. We are grateful!
Please also pray for Jacquelyn (11), who just relapsed for the second time with A.L.L.. You can visit her web site at www.caringbridge.com/mo/jacquelyn to leave her a message.
With a thankful heart,
michelle
Saturday, November 8, 2003 6:19 PM CST
On Tuesday of this week, we took Chloe to Ks. City (3 hour drive) for a neuro-phych. evaluation. We didn't have a chance to do this before radiation/transplant so this is as near a "base-line" report as we will get. Results were not surprising. Chloe is at the very high end of verbal skills, but low on manipulative problem solving. When you think that for half of her little life she's been sick, this is not unexpected. She is gradually gaining confidence in things like getting dressed by herself, buckling her shoes, and buttoning.
The next day, we were back in Ks. City unexpectedly. Chloe had complained of leg pain and Dr. Wall wanted her seen by an oncologist. We did too. They checked her out and did extra labs. Most everything looks all right. I suspect growing pains. If she has been measured accurately over the last 2-3 months, she has grown 1 1/4 inches! Even at that, we are keeping a close eye on things, as you can imagine!
Last Sunday at Church, we were blessed to meet two couples from out of town that have prayed for Chloe for some time. They wanted to meet her, but at the time she was off socializing somewhere. When we rounded her up, she was very comfortable chatting and letting them hold her. It was a joy to see that fear has given way to trust and innocence again!
After her check-up and port access on Wednesday, Chloe walked over to Dr. Emami, fully expecting him to pick her up, which he did. She sat happily on his lap while he finished talking with us. I think he was surprised, but delighted. It was good to see him and some of the wonderful nurses that took care of Chloe when she relapsed last Spring. They could hardly believe it was the same little girl!
So for now, we watch, we pray and we enjoy each healthy day we have together. Thanks for stopping by. Let us know you were here by leaving a quick note. We love to hear from you, too!
Blessings,
michelle
Wednesday, October 8, 2003 6:02 AM CDT
Hello everyone. Thanks for stopping by to check on Chloe.
She continues to do wonderfully. Her counts and chemistries are all in perfect range. She feels good. Her hair is growing back, still darker than before. She is a little songbird like her older sister, Amy. She sings about anything that is on her mind. Very cute!
Our household is busy. Bethany, our oldest daughter, has her first job after school at our church day care, The Fun Factory. That was a big decision for her as it meant giving up ballet. Mary and Amy are still dancing and growing into beautiful young women, like their sister.
I have Josiah, our nine-year-old, at home for school this year. That takes most of my time. The one-on-one teaching is really good for him.
Benjamin loves kindergarten. He fits in the school "box" nicely. He is a social little guy, well mannered and enjoys learning.
Daniel is doing his best to talk having conquered walking. In the mornings, he and Chloe hang out with Anna, the young lady who lives with us. They do fun stuff like go to the lake, park and library. I would not be able to devote my time to Josiah if I didn't have Anna! She is a tremendous blessing to us.
With communication now flowing between Chloe's doctors, we are feeling better about her follow-up care. We know that ultimately she is in God's hands, but as parents we share in the responsibility for her life and health. Sometimes it's a fine line to walk, between faith and responsibility.
Don't forget to sign the guest book. We appreciate your notes!
michelle
Thursday, September 25, 2003 2:08 PM CDT
Although sickness has been making its way around our house, Chloe remains pretty healthy. She has had some tummy pains this week with diarrhea. I'm keeping an eye on that since she just weaned off her Cyclosporin (anti-rejection) and these symptoms could indicate GVHD of the gut. I'm not overly concerned yet since others of the family have had these symptoms and I know they don't have GVHD!
Yesterday I drove my older girls and 5 others to a concert 3 hours from home. We had to travel the highway that leads to the hospital where Chloe was treated when she relapsed last spring. The emotions that sprung to life on that road surprised me! For weeks we traveled anxiously back and forth with hearts aching, minds in turmoil. The girls and I stopped to eat at Wendy’s. The same Wendy’s where Trey and I nervously waited for an out-of-state doctor’s call before we traveled on and lost our cell phone signal. Something about being on that highway made my stomach feel a little jittery.
Over the last 6-7 weeks I’ve wanted to throw the cares of the past away and move on as if those cares never existed. We were gently jolted back to reality this week. Once again we are faced with decisions between different doctor’s philosophies. There is no immediate crisis, thank God. But we are thinking we should have some sort of plan in place if Chloe were to relapse. God forbid! Her transplant doctor does not check for early signs of relapse, believing that in Chloe’s case, all the “big guns” have been used and anything else would only prolong the inevitable. But, do we agree?
In our pediatrician’s office Monday morning, as we talked this over, I knew that there was no way I could throw up my hands in defeat should relapse occur. I guess I had so successfully “not gone there” that I was blissfully enjoying the relief of a worry free life. But now, faced with the decision about how to handle follow-up care, reality hits again. Nothing like life and death decisions to bring you down to earth.
On a brighter note, we have applied to a different wish organization for Chloe’s original pontoon boat wish. She has continued to mention it, so I couldn’t bring myself to settle for a play set. That may have been nice, but would have excluded many of her older siblings. For that reason alone it may not have gotten used much. She is happiest when she is with all her sisters and brothers!
Thank you for checking in and don’t forget the guest book.
Blessings,
michelle
Tuesday, September 16, 2003 1:16 PM CDT
I almost forget to post updates on Chloe anymore just because there is not much out of the norm to report! It is so wonderful to look at this vibrant, healthy three-year-old and not ache for her suffering. While in the back of our minds we know that she is still at risk for relapse, those thoughts do not dominate our lives by any means. We are just enjoying, no, relishing these beautiful normal days!
Chloe has lost every bit of steroid weight and is right at 50% for height and weight. She's perfect. Her counts as of yesterday were also perfect.
WBC 9.7
Platelets 232
HGB 11.6
All her chemistries were excellent as well.
Camp Sunrise report:
Excuse the expression, but Camp Sunrise was a BLAST! It was let-down, cut-loose time for all of us. The clowns were a hit with Chloe. And come to think of it, Chloe was a hit with the clowns. At the family photo session with the clowns, Chloe would wander over to chat with them between poses. As another family posed, they would have to chase Chloe out of the picture. She enjoyed the whole thing enormously.
Baby Daniel got a kick out of the martial arts demonstration (no pun intended). He giggled all the way through it and had everyone else in the room laughing too! Trey and all three older girls climbed the "Alpine Tower". No small feat! The boys loved the boats, frogs and fish in the lake. I managed to take a three-hour nap one day. That never happens at home!
Other than our car breaking down twice on the way, and having to rent a van to get the rest of the way there and back, it was a perfect weekend! I so appreciate the wonderful volunteers who work so hard to bring fun to families lives that have been turned up-side-down by horrible diseases! It helps a great deal!
Thank you to everyone who has and continues to pray for Chloe and our family. God has been so faithful to bring us through a very stressful season. While we are "breathing easier" now, we continue to look to Him for strength and guidance. He is so good and so worthy of our life's devotion.
Please sign the guest book so we know you've visited!
Bless you all!
michelle
Friday, August 29, 2003 11:31 AM CDT
Today is day 100 since Chloe's transplant! The photo above was taken this morning. She had blood work yesterday, and everything is looking very good indeed.
Later today, the entire family will head for Camp Sunrise, which is sponsored by the American Cancer Society. This will be our first "vacation" in over four years, even if just for a long weekend. We are excited about it, and are so thankful that Chloe will be able to enjoy herself. All the other kids deserve a break too.
Here are some of her counts:
WBC 8.3
RBC 3.53
Hemoglobin 10.9
Platelets 211
Seg9
Lymph1
Wow! It blows my mind to think "descendants" from Daniel Ryan's umbilical cord we saved almost 1 year ago are producing new healthy blood cells in little Chloe. Chloe's third birthday is next Thursday, September 4.
Thank you again for checking in.
Trey
Thursday, August 21, 2003 10:31 AM CDT
Hello friends,
Today is day +92 and Chloe continues to do very well. Blood counts and liver functions are all good. She tires and gets fatigued, but otherwise feels great.
Next Friday is day +100, a milestone for transplant patients. On that day, the whole family will leave for Camp Sunrise, a camp for kids with cancer and their families. We will spend four days playing, relaxing and making new friends. We're looking forward to it.
Since we've been home, the girls and I have gone through every closet, drawer, nook and cranny, cleaning, organizing and generally getting back on top of things around the house. Somehow that gives me a sense of being in control of my life...regardless of how true that actually is! I think it's my inner pendulum swinging to the other extreme from the way things were last year.
At 39 I was pregnant with a surprise #7. Then Chloe was diagnosed with Leukemia. Two days after her 2nd birthday I had my first c-section to deliver Daniel Ryan. A week later my appendix ruptured so it was back to the operating table. Just as I was feeling normal and resuming normal activities, Chloe relapsed horribly, spending 5 weeks in the hospital 3 hours from home. Transplant being our only option, we began testing the other children for a bone marrow match. We were informed then that the umbilical cord blood we had saved from Daniel's birth was a perfect match for Chloe. We decided to use it (instead of one of the other two matched siblings) so we went across the country to a doctor skilled in this type of transplant.
Okay, so now, being on the other side of all that, maybe I'm grasping for all the order, routine and organization I can get! I must say I prefer life this way, but I have learned a little about how to be content in all circumstances.
Thank you for your prayers!
2 Cor. 1:9-11
"Yes, we had the sentence of death in ourselves, that we should not trust in ourselves but in God who raises the dead, who delivered us from so great a death and does deliver us; in whom we trust that He will still deliver us, you also helping together in prayer for us, that thanks may be given by many persons on our behalf for the gift granted to us through many."
Blessing,
michelle
Sunday, August 10, 2003 10:50 AM CDT
God is good in Kirksville!
We are resuming life on as close to a normal basis as we've been in 15 months. Although I have been cooking for several weeks, Chloe still asks every day, "Mommy, when is dinner going to be here?"
Chloe had a flare up of GVH this weekend. Nothing severe or bothersome, just an acne-like rash on her face and arms. It already looks much better. Dr. Wall wasn't surprized since we are weaning from the Cyclosporin so quickly. She made fun of me for worrying about not enough GVH (for the graft vs. leukemia effect). I actually feel better having seen some evidence of the graft at work. Oh, me of little faith!
Thank you for checking in on Chloe and for your continued prayers!
Blessings,
michelle
Friday, August 1, 2003 8:22 PM CDT
HELLO FROM KIRKSVILLE, MISSOURI!!
On Tuesday, July 29th after an uneventful surgery to remove Chloe's central line and exactly three months in San Antonio, we began the 1,000 mile trek home.
We arrived in Kirksville Weds. evening to a house cleaned and ready for us to move back in. And, of course, we promptly messed it up! Thursday was spent working hard, unpacking, reorganizing, and attempting a return to life as it was 16 months ago. I don't know why I thought that should happen in a day. Did all this really happen or was it a very long bad dream?
Chloe has actually been very emotional and fatigued since arriving home. More so than I have seen since steroid days. It was, after all, a long drive home. And it is another big change for her. She is just two (soon to be three). And she is, after all, just recovering from a transplant! Okay, so calm down, I tell myself. Sure she's tired, fatigued, emotional, and volatile. She has good reason.
In the next few days and weeks, we'll settle into a new routine, catch up on sleep, and we'll all feel like we're really home (sigh).
Thank you for checking in and please keep praying. Your notes are wonderfully encouraging, too.
Blessings from Kirksville!
michelle
Tuesday, July 22, 2003 4:23 PM CDT
Today I'm 40 and all is well!
Chloe looks and feels so great! It is just wonderful to watch her romp around, laugh and imagine, and even be a little testy. Her limp is gone and you would never know by looking at her the amount of suffering she has endured over the past year. The only difference is that now she is a brunette instead of a blonde.
Our days at the apartment as well as clinic visits have become boring. But I can't complain about that. It's just what I prayed for! We are hoping to head home sometime this weekend if we get the okay from Dr. Wall.
Tomorrow our big girls come back. If we didn't need them to help with the little ones in two different cars on the way home, we would have them stay put. I'm so excited to see them! They are friends, not only daughters.
This is indeed a happy birthday knowing all seven of my children are healthy.
The next time we update, I hope it will be from home.
Final blessings from San Antonio!
michelle
Monday, July 14, 2003 11:05 PM CDT
Hi friends. Chloe is doing really well. Her white count was 3.8 today, and her platelets went up from 21 Friday to 34 today. Though 34K is is low for anyone, it shows she is making progress on her own. We also found out today that her blood tested to be 100% donor cells. This is great news. Her next clinic appointment is in three days.
Her hair is coming back several shades darker. Her eyebrows and eyelashes are black (it's normally very blond). The doctor says the darker hair is from radiation and the anti-rejection drug. It may go back to like it was after a year to 18 months. She's still very cute with her new look. It looks almost like she's wearing eyeliner.
We're really ready to get home. We're still on track to leave by the end of the month. San Antonio is a very nice city, I must say. We have met many people who love God here.
Until next time,
Trey
Tuesday, July 8, 2003 10:36 AM CDT
Chloe is doing exceptionally well. She is not sleeping as much as she had been but still gets tired pretty easily. She feels good and is perky in between naps. A little bit of hair is beginning to grow, and a set of dark eye brows are coming in. One of the anti-rejection drugs causes temporary dark facial hair. I've been assured that she'll still be blonde!
Dr. Wall said today that we should look at going home the end of this month! It's hard to imagine life at home getting back to normal. I do wonder if life will ever be "normal" for us agian. If so, I know we won't take it for granted.
Tomorrow Bethany, Mary and Amy will go home for two weeks. Bethany and Mary will attend camp with our church youth group and Amy gets to go on vacation with one of her best friends. In their absence, our dear friend Anna, who lived with us last Fall, is here to help until we go home.
Thank you for your prayers and for checking in. Don't forget to sign the guest book.
Blessings!
michelle
Thursday, July 3, 2003 10:18 PM CDT
Chloe's amazingly high counts from Sunday were back down to "normal" on Monday. The doctor said this kind of thing is common. The trend is still up; that's good.
Today after being off antibiotics for one day, Chloe had a fever. Dr. Wall suspects the problem to be bacteria lurking in her hickman catheter. The plan is to go ahead and remove it next week.
She has had this device in her chest since February when she relapsed. After it's gone, they'll go back to accessing her port, which is somewhat painful and traumatic for her. The up side is she will be able to take regular baths and go swimming again. Now that I think of it, I don't think she's ever been swimming other than hanging around on the stairs of a pool.
Thanks again for checking in.
Trey
Sunday, June 29, 2003 6:52 PM CDT
Chloe is making her own blood cells!! We expected her to need platelets today since they were 26 yesterday. But today they were 36! Normal range is 150 - 400. On Friday her white count was 2.4. Today it was 9. Normal range is 4 – 15. This is REALLY great!
She has been sleeping about 16 hours a day for the last few days. This is known as somnolence syndrome and occurs around six weeks after cranial radiation in children. One theory is that the brain is trying to heal itself from the radiation. Please pray with us that is does indeed!
Our pastor and his family from Kirksville, good friends, just left after spending the last four days with us. Between our 7 kids and their five, our apartment was bulging at the seams when we were all here. We tried to make the most of our time together which meant a lot of late nights, so we’re pretty tired now. But it’s a good tired.
Thanks for checking on Chloe. Keep praying that the new cells will completely wipe out any remaining leukemia.
Blessings,
michelle
Thursday, June 26, 2003 7:28 PM CDT
Chloe came home from the hospital on Tuesday. She continues on IV anti-biotics once a day in the clinic for the next week. Her WBC is growing slowly but steadily.
Today she slept on me for a couple of hours while at the clinic. I made sure the nurse understood how very unusual this was for active Chloe. She became somewhat alarmed until I asked if it could be somnolence syndrome. She breathed a sigh of relief and said, "Oh yeah, that's probably what it is! Good thinking, Mom." Sleeping a LOT around 6 weeks after radiation is common as the brain is trying to recover and heal itself. Today is exactly 6 weeks to the day that she finished her radiation. She took another nap when we got home from clinic and then went to bed before 7:00 tonight. That must be what is going on.
Chloe and Daniel Ryan both had thier cheeks swabbed this week so DNA testing can be done to determine what percentage of Chloe's new cells are from her donor. I asked the doctor if Chloe will now have two DNA tpyes. Amazingly she will. He said she will "bleed brother" but her skin and hair, etc. would be original Chloe. Incredible!
This scripture caught my attention today.
"He has delivered us from such a deadly peril, and He will deliver us. On Him we have set our hope that He will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."
(2 Cor.1:10-11)
Thank you for being one of the "many". It's a blessing to know you're checking on us and praying for Chloe. Please remember to sign the guest book!
michelle
Monday, June 23, 2003 9:24 AM CDT
Chloe has been in the hospital with a bacterial infection since Friday. It was one of those bugs that reside in your gut and got out of control as a result of the high dose chemo and radiation. It has responded to antibiotics and she will probably come home today or tomorrow.
Our doctor wants us to stay in San Antonio through July, which is fine with us. Although we are anxious to go home, we don't want to do so prematurely. It's in God's hands.
I've been pondering the purposes of God and His hand in the events of our lives. Sometimes we can *feel* as though we have fallen through His fingers or out of His plan. We assume that somehow, unknown to us, we disqualified ourselves from His purposes. Did we make a wrong turn? Did we get knocked off track by unexpected circumstances, bad decisions, or our own hardness of heart? But these questions reduce God to a human level. He is so much bigger and wiser than we!
He is so vast and incomprehendable that The Bible says, "We know ALL things work together for GOOD to them that love God, to them that are called according to His purpose." (Rom. 8:28) Do you love Him? Oh, I do!
He hasn't forgotten about us in the midst of His busy schedule! The Bible says, "How precious are Your thoughts to me, O God! How great is the sum of them. If I should count them, they are more in number than the sand: when I awake, I am still with You." (Ps. 139: 17-18) Some of us need to "awake" and realize we are still *with Him* because He hasn't dropped us!
There aren't any cracks in His purposes. His hand is strong enough to hold onto us even when we feel as though we have traveled far from His presence. The Bible says, "Where shall I go from Your Spirit? or where shall I flee from Your presence? If I rise on the wings of dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast."
Good news! For those that love Him, there is no escape from Him or His purposes. We can rest in the fact that He is holding us, guiding us and working it all for GOOD according to HIS purpose!
Friday, June 20, 2003 11:15 AM CDT
Chloe is back in the hospital. She woke up at 4 a.m. with a fever. We took her to the clinic at 8:30, and her temp. was over 102. The doctor thinks this is GVH (graft versus host), which is not necessarily a bad thing. But, as usual we can't take any chances, so they're giving her antibiotics. The doctor thinks she'll be inpatient a couple of days.
Also, our wonderful doctor (and I do mean that, no sarcasm) thinks it will be best for us to stay through July. So here we will stay.
Rom 5:17 For if by the transgression of the one, death reigned through the one, much more those who receive the abundance of grace and of the gift of righteousness will reign in life through the One, Jesus Christ.
Trey
Wednesday, June 18, 2003 9:41 PM CDT
Hello everyone. Thank you for checking in on Chloe!
She is feeling very well. It's actually amazing how well she is. God is hearing all of your faithful prayers! Other than limping around on her right leg, you wouldn't have a clue as to all her little body (and soul) has endured.
Today her blood type was "unknown". You know what that means? It is changing! She used to be O+, like me. Now she is changing over to B+ like Daniel Ryan, her donor, and Daddy. Keep praying that those new cells wipe out and prevent any more leukemia. That remains the biggest enemy.
Dr. Wall is hinting that we should begin thinking about getting our lives back to normal in the near future. Does that mean going home sooner than we thought?? She said she may have an answer for us next week..... We'll let you know!
"But as for me, I will always have hope; I will praise You more and more." Ps. 71:14
michelle
Thursday, June 12, 2003 4:02 PM CDT
Just now I was rocking baby Daniel before I put him down for his afternoon nap. It was an extraordinary moment. Why, you say? Because sleeping peacefully near-by was little Chloe, home from the hospital. On this afternoon I don't have to leave one to care for the other. It was one of those wonderfully, contented mother-moments and I was milking it for all the joy it was worth! As I looked back and forth between the two little faces, all I could do was smile, sigh, and say "Thank you, Jesus."
Chloe's WBC (white blood count) was 1.6 this morning. She is feeling really good and eating very well. As she somewhat feebly walked from the car to the apartment she said, "See, my legs are strong!" Once inside, she was immediately crawling around on the floor with Benjamin pretending to be puppies.
I know we still have a long journey ahead, but we aren't looking too far down the road (since we can't see very far, anyway). But with a combination of celebrating God's goodness today and trusting His goodness for tomorrow, we'll just keep moving forward. Chloe summed it up as we left the hospital with a phrase she learned from her nurse. "Rock on, sister!"
Tuesday, June 10, 2003 6:25 PM CDT
Chloe is improving by the day! WBC was .7 this morning. She ate some eggs for breakfast, cookies for a snack, and chicken at lunch time. I had just gotten back to the apartment and got a call from Mary that Chloe wanted pizza! So, pizza it was!
I took Daniel with me to deliver the pizza. Chloe hadn't seen him since transplant day, three weeks ago. When they saw each other, they both laughed! It was the sweetest thing. When it was time to go, Chloe pointed her finger at me and said, "Don't you take him home!"
It looks like we will be able to bring her home at the end of the week if all continues to go well.
Thank you for your prayers and kind words of encouragement!
Blessings!
michelle
Sunday, June 8, 2003 9:16 PM CDT
Big news! Chloe ate a few bites of food tonight. I received a call from Michelle at 6 p.m. Chloe saw a TV commercial with macaroni and cheese, and she started some chant about macaroni...yummy yummy yummy or something. I ordered a side of it from a Black-eyed pea restaurant near the hospital and took it up. She took a few bites of it. This is great news.
She's had a rash for the last few days, and has been in quite a bit of discomfort from the itching. Late today she was able to keep down the oral medicine they gave her for it (hydroxizine), and it helped immensely.
I think our new favorite song is the Barney tune, "Macaroni, Macaroni, mac and cheese". Michelle was singing and doing the choreography to the song to Chloe, she was so excited. As I'm writing this note, I hear one of my girls singing it in the other room. It's kind of catchy.
There are still plenty of battles ahead, but we'll take this victory and give God glory.
Trey
Friday, June 6, 2003 7:28 AM CDT
Something good is beginning to happen! Chloe's white blood count is .4 this morning! She ran a low-grade fever yesterday. Hopefully that is graft vs. host (GVH), meaning the new cells are beginning to take over.
Dr. Wall said yesterday that she is over a big hump, referring to the effects of radiation and high dose chemo. Liver, kidney, lung and heart are all doing well after taking quite a beating. As we've said before, Chloe is one tough little cookie. Thank you, Lord God, for bringing her safely this far!
One year ago today, Chloe was diagnosed with high-risk T-cell Acute Lymphoblastic Leukemia. It seems like that was a million years ago. Today it looks as though new life is blooming within her little body. Today Daniel Ryan, Chloe's cord donor, is nine months old and such a delight. Today I thank God for seven incredible children and the husband of my dreams (after almost 20 years). Today I'm so thankful to have friends and family who have stood with us strongly over the past year and helped us carry a burden to heavy for our shoulders.
"For the Lord is good and His mercy endures forever!"
Thank you for signing the guest book.
michelle
Wednesday, June 4, 2003 8:21 PM CDT
We so appreciate all who have checked in on Chloe and signed the guest book. Thanks for caring.
Chloe is still waiting for little brother's cells to begin working. WBC at .2 today. She is healing nicely, but is having a lot of tummy pain. Her TPN (liquid nutrition) is being cut back in hopes of generating some hunger. I made her take one little bite of yogurt today to try to get her system up and running again. Needless to say, coaxing a two-year-old into eating something that she doesn't want was no easy battle!
Amy turned eleven yesterday. Her sisters helped make the day special since I couldn't be here. Trey and I did take her out to dinner last night while Mary stayed with Chloe and Bethany with the boys.
Those girls have been amazing through this whole thing, never complaining or whining or feeling sorry for themselves. When people ask how I "do it", I say, "Bethany and Mary!"
Pray that those cells begin to grow, grow, grow!
Thanks everybody.
michelle
P.S. If you missed Trey's poem, check the last journal entry!
Monday, June 2, 2003 9:27 AM CDT
Thanks for checking in. Chloe's white count is 0.3 today, up from 0.1. There are also some segs and bands. Thank you Jesus!
She is still feeling okay, and the doctors are still thinking it's going well. The main enemy is still leukemia, so let's pray that it stays gone forever.
Last Summer during Chloe's first few months of treatment, as we finshed a three-week chemo cycle I was putting Chloe to bed. The mixed emotions I felt made me want to write, but I put it off. This weekend while Chloe slept, I revisited those emotions and wrote this poem.
One day in twenty one
This one day in twenty one, three week cycle now complete
my baby girl, she ran and played without the misery
the misery? oh yes indeed if one word may describe
piled on nausea insomnia, mental roller coaster ride
day one we see the doctor, nurses and the like
my baby girl, she loves them, they are her social life
although they poke and stick her; inflict the needed pain,
my baby girl can hardly wait to see them once again
days one through five so dreaded, the medicines to take
her big blue eyes so trusting, and yet she hesitates
for prednisone tastes aweful, though veil the taste we try
a car ride we will offer; a bribe so she'll comply
oh yes, one more condition to go in the car seat,
"don't throw up" we tell her, (that's quite the toddler feat)
my baby girl will do her best to keep the chemo down,
but just in case, big bowl is ready and a little towel
day five: it is a milestone, for it marks the end
of prednisone in grape juice, but side effects begin
my baby girl's emotions, oh how to really say?
Puncutated, overloaded, intense, kind of convey
shouting over nothing, crying from the pains
veiled neath the drug-caused rages, my baby girl remains
sweet and content, happy and secure
amazing all who see her, raspy words and smile so pure
videos in my office, on the couch she lays
bottle and her blanket, my baby girl's weekdays
three week cycle nears completion, my baby girl returns
puffy face now back to normal, and running doesn't hurt
life almost back to normal, like cancer never came,
then stares at hair remind us that life is not the same
one day the drugs and chemo, this protocol complete
no dreaded steroid pulses, the smell her skin secretes
tonight I rock her tender, musing as I pray
my baby girl she felft herself, though only for a day
tomorrow is day one again, more drugs and chemo fun
we'll trust in God again, we must, the race enduring run
Trey Allemang
Thursday, May 29, 2003 7:21 PM CDT
Hello all,
Today Chloe's white count was o.1 instead of "less than o.1". I'll take that as improvement. Other than still vomitting up the mucus every few hours, she is doing alright. Her mouth is getting better and the rash is almost gone. The doctor said she is over the radiation and chemo and is healing now. Hooray! He said she is just boring. I told him that is exactly what I've been praying for... a boring transplant. So far....yawn, so good.
Trey and I aren't enjoying our hospital marriage very much. We see each other only in passing as one is comiing and the other leaving. The stress on the kids from absentee parents surfaces now and then. If all goes well, we might be able to bring Chloe home (to the apartment) in two or three weeks. I pray so.
Thank you all for checking on us and for your prayers. God is hearing you.
Don't forget to sign the guest book! Thanks.
michelle
Wednesday, May 28, 2003 3:56 PM CDT
Chloe's doctor said her mouth sores are healing. Also, her diaper rash is improving. So? The doctor says this is a good indication of engraftment; the new cells may already be producing some white blood cells. They expect her white counts to show up any time. This is great news! Chloe is feeling a little better too. Michelle just called me from the hospital and said Chloe drank some water. Another good sign; it's been a week.
Saturday, May 24, 2003 8:50 PM CDT
Moses asked to see God’s glory. The Lord said, “I will cause all my goodness to pass in front of you and I will proclaim my name, the Lord, in your presence.” (Ex. 33:18-19)
The next day God passed in front of Moses and proclaimed His Name. “The Lord, the Lord God, merciful and gracious, slow to anger, and abundant in goodness and truth.” (Ex.34:6)
Wow! Did you catch that? His Name! The Lord God, merciful, gracious, patient, abundant in goodness and truth! His glory is His goodness. It’s not just a cliché’. God, the Lord God, is good!
No fever today! Nothing has grown in cultures. Hopefully it was just a reaction from some of the drugs. The “mucositis” is pretty bad. You can imagine why they call it that! She vomits every few hours even though she hasn’t eaten in a week. The pain meds. are doing a pretty good job. Other than a very sore mouth and throat and rash on her bottom from constant diarrhea, she’s doing okay. That may sound pretty miserable, but in comparison to the agony she was in when she relapsed, this is mild. We are thankful that she’s not suffering any more than she is right now. Even in this, she is still the definition of her name. Chloe: vibrant, full of life!
There are five balloons tied to her bed. She can’t leave her room, so for “exercise” she bats or kicks the balloons vigorously. She didn’t feel like getting up today so she lay in bed to do it. Her nurse was in today while this was going on and thought it was the funniest thing she had seen in her years on that floor. Here is bare bottom Chloe (because of the rash), feet in the air, kicking her balloons all over the place. Hey, whatever works. It got her heart rate and respirations up!
Again, we are grateful for your prayers and notes of encouragement! They are a blessing to us.
michelle
Friday, May 23, 2003 10:09 AM CDT
The doctor calls it "dog days". That's where Chloe seems to be. She hasn't eaten for a few days. This morning she woke up asking me, Daddy, can you get the bucket?". I almost made it in time. She also has a fever (101), so she will start on antibiotics this morning and they just drew blood for cultures (to see if she has a bacterial infection). She started on morphine yesterday for the pain, but it made her itch a lot. She is starting on another pain medication today which doesn't cause itching.
Although this is tough, it's quite normal for children at Chloe's stage of treatment. Mary is with Michelle at the hospital with Chloe today. Bethany was there yesterday.
Thanks for checking in and praying for Chloe.
Trey
Wednesday, May 21, 2003 7:24 AM CDT
Yesterday, May 20th, Chloe received the cells from her baby brother's cord blood that we pray will bring new, healthy LIFE to her body! All her brothers and sisters came for the occasion with balloons, and bubbles (her favorite). She had been given Benedryl as a pre-med and was feeling pretty tired and cranky so they didn’t stay long. About half way through she fell asleep on Mommy.
So far her doctor gives her an A++ (that’s really good!). She is taking it all in stride. Her appetite is gone completely. She refuses everything. Besides nausea and diarrhea, she’s doing well. Now we wait and pray for the new cells to engraft (get to the right place and begin producing new cells) quickly. The next several weeks and months are critical as she has no immune system whatsoever.
Thank you so much for praying for Chloe! Your notes mean a lot. They are a strength to us. Keep signing that guest book!
Bless you all!
michelle
Friday, May 16, 2003 6:52 PM CDT
Chloe checked in to the hospital arond 11 a.m. Her red count was 7.0, so she got some blood this afternoon. She is still feeling really good. This weekend is the high dose chemo. It's actually 20 times the amount she received when she was on the relapse protocol. They don't want to mess around since is her last chance, medically speaking.
She is the most resilient little thing, and funny! It's really fun being around her in the hospital, especially when she's feeling good.
Michelle wrote some good stuff Sunday, and I'm going to repaste it today in case you missed it.
---
Our family worshipped God together this morning here at a local church in San Antonio. This will be the last time for a while that we will be able to be in church all together. One of us will have to be with Chloe until her immune system recovers, up to a year from now.
God has been so good to us. We are grateful for His love and faithfulness to us. His love is not dependent on or necessarily reflected in our circumstances. He Himself is GOOD. Yes, bad things, like leukemia, happen. But that is not God. Life is not God. He is good and His goodness can be trusted and should be celebrated.
There is a great danger in equating the love or goodness of God with the nice stuff that happens to us in our lives. If that is how we measure His love in our lives, you could very well end up with a "He loves me, He loves me not" list. A scale like that does not accurately measure His overwhelming love for you. The fact is that "God's love was demonstrated while we were yet sinners in that Christ died for us”(Rom.5:8). His love has been shown to you not in that you live in the U.S.A., not in that you have a nice home or nice car or enough money to pay your bills, or that your child doesn’t have cancer! Neither does a lack of home or car or money or your child having cancer mean that He loves you not!
Today I’m thankful for His love. I’m thankful for His goodness; that He Himself, His very essence is GOOD. “The lovingkindness of the Lord is from everlasting to everlasting on those who fear Him” (Ps. 103 17). Another translation says His love is WITH those who FEAR Him. I define the “fear of the Lord” as “the awareness of His nearness”. (selah) When we are really aware of how near He is to us, our lives are under girded with a pervading peace and content joy. I guess that today I’m a little more aware of Him.
Thank you all for sending out prayer requests for Chloe. Our family and friends, new and old, and have been so wonderful and supportive. You all are easing our burden and we are grateful!
Be sure to sign the guest book. It’s a source of great encouragement to know you’re checking up on Chloe and the rest of us.
Blessings,
michelle
Tuesday, May 13, 2003 5:16 PM CDT
Today's radiation went well. No throwing up. Chloe got some fluids at the clinic this morning, but when her lab report came back, they said it actually looked better than yesterday and really didn't need the extra fluid afterall.
As we were leaving the cancer therapy center, one of Chloe's nurses stopped us. Her 12 year-old daughter had sent a toddler Bible to give to Chloe. Inside she wrote these words.
Dear Chloe,
You may not be able to read this now, but may God bless you and keep you, may His face shine upon you and may He cover you with His precious blood always and forever. May He heal you and by His stripes you will be healed. I hope you grow to be a child of God, and that you will be healed. Hope you like the Bible, it was mine when I was your age.
love, Marigrace
What an encourgement! Praise God.
michelle
Monday, May 12, 2003 10:32 AM CDT
Quick update. Chloe had her first total body radiation session at 7:00 this morning. We then took her to the clinic at hospital. Everything was going fine. Then as we were putting her in the car, she started throwing up...and up...and up...you get the picture.
On the way home she coughed. She look at Michelle and laughingly said, "I almost threw up!" Michelle gave her a bath, and now she's romping around and enthusiastically talking about everything going on around her.
We forgot to give her zofran (anti-nausea) before we left at 6:45 this morning. I bet we don't forget that again.
When we got home, the other children were at peace. They were doing their schoolwork in the garage (for a change of pace?).
Trey
Sunday, May 11, 2003 3:46 PM CDT
Our family worshipped God together this morning here at a local church in San Antonio. This will be the last time for a while that we will be able to be in church all together. One of us will have to be with Chloe until her immune system recovers, up to a year from now.
God has been so good to us. We are grateful for His love and faithfulness to us. His love is not dependent on or necessarily reflected in our circumstances. He Himself is GOOD. Yes, bad things, like leukemia, happen. But that is not God. Life is not God. He is good and His goodness can be trusted and should be celebrated.
There is a great danger in equating the love or goodness of God with the nice stuff that happens to us in our lives. If that is how we measure His love in our lives, you could very well end up with a "He loves me, He loves me not" list. A scale like that does not accurately measure His overwhelming love for you. The fact is that "God's love was demonstrated while we were yet sinners in that Christ died for us”(Rom.5:8). His love has been shown to you not in that you live in the U.S.A., not in that you have a nice home or nice car or enough money to pay your bills, or that your child doesn’t have cancer! Neither does a lack of home or car or money or your child having cancer mean that He loves you not!
Today I’m thankful for His love. I’m thankful for His goodness; that He Himself, His very essence is GOOD. “The lovingkindness of the Lord is from everlasting to everlasting on those who fear Him” (Ps. 103 17). Another translation says His love is WITH those who FEAR Him. I define the “fear of the Lord” as “the awareness of His nearness”. (selah) When we are really aware of how near He is to us, our lives are under girded with a pervading peace and content joy. I guess that today I’m a little more aware of Him.
Thank you all for sending out prayer requests for Chloe. Our family and friends, new and old, and have been so wonderful and supportive. You all are easing our burden and we are grateful!
Be sure to sign the guest book. It’s a source of great encouragement to know you’re checking up on Chloe and the rest of us.
Blessings,
michelle
Wednesday, May 7, 2003 8:10 PM CDT
Hi again. Chloe finished her three days of cranial radiation today. So far she's still feeling good. This feels like the calm before the storm. Next week she'll have total body radiation.
I haven't talked much about what's happened since we've been here. Here's an interesting story.
The first day we arrived in San Antonio, just after we unloaded out stuff, I made a milk run. I didn't know where any stores were, so I drove a little and turned on a unknown street. I came to a Walgreens and went in and grabbed a gallon of milk. When I went to pay, the young lady cashier asked me if I wanted to donate $1 to the American Cancer Society. Surprised, I said "Sure, they're helping me".
Then the young lady replied, "I had cancer when I was a little girl, and I'm doing fine now." I told her we had come to San Antonio for Chloe's transplant and that God must have set us up. She just looked at me.
This was the absolute first person I met in San Antonio other than the leasing agent at the apartments. I drove home with my gallon of milk wondering and asking God in my thoughts if that was a sign from Him. It sure was interesting.
My (Trey) parents have been here for almost a week. They have been a huge help, shopping, helping watch children, etc. They have to start returning home tomorrow. We will miss them.
Bethany and Mary (our oldest children 16 and 15) started a blog site to tell their story. Here's the link.
Thank you for continuing to pray for Chloe. Next week, the battle intensifies with total body radiation and high dose chemo.
Trey
Saturday, May 3, 2003 6:00 PM CDT
Hello friends,
Our first week in San Antonio has been filled with doctor appointments, and settling into apartment life. Everyone has done well adjusting to our new, smaller home away from home. One big plus to appartment living for the kids, is the pool! It's also a great incentive for getting school work and chores done.
Today was spent at Sea World. The hospital got us several complimentary tickets, enough for the average family, so we only had to buy a few. We thought we should go together while Chloe is still feeling good and is able to be in public places. Grandma and Grandpa Allemang arrived last night and were able to come with us.
Shamu was a hit. Fortunately, we were out of splash range! Josiah caught a really cool green lizard. Chloe and Daniel got pretty worn out in the afternoon so Trey brought the three of us back home and went back to play some more with the older kids. We'll post pictures.
On Monday Chloe begins three days of cranial radiation.
Trusting God's leading (and miraculous protection) through the "Sea",
michelle
Sea World pictures
Tuesday, April 29, 2003 9:34 AM CDT
Dear friends,
We drove 300 miles on Sunday. We stayed with some friends in Pittsburg, Kansas Sunday night. All our kids had a great time, esp. Josiah with Caleb Sims.
We drove about 650 miles Monday and ended up in San Marcos, Texas. This morning we'll have a leisurely 50 or 60 mile drive to our new temporary home
Chloe has doctor's appointments scheduled for the rest of the week beginning Wednesday.
This may be the last time we write for about a week, as we wait for Internet service in San Antonio. This motel has high-speed internet...just plug in your ethernet cable...very cool.
Sunday night, Doug Kreighbaum, Paul Sims and I were talking about the goodness of God. Doug talked about how you can never really see the reasons for everything you go through until sometimes much later. It reminded me of this Scripture that I read last week...
Psalm 77:19 (NIV)
Your path led through the sea,
your way through the mighty waters,
though your footprints were not seen.
I love that. God is so with us, but He doesn't beat us over the head screaming. His path is leading us, and we may not see a giant footprint with our natural eye. We will always be able to look back and say, "O Lord, you were there and you were good!" Like Jacob said, "Surely the Lord is in this place, and I did not know it." (Genesis 28:16 ).
Trey
Friday, April 25, 2003 0:16 AM CDT
Chloe's first appointments in San Antonio are Wednesday, April 30th with the radiologist, and May 1st with the transplant doctor.
The treatment schedule is:
week of May 5: cranial radiation (twice a day)
week of May 12: total body radiation
May 16: admission for transplant, more chemo
May 20: transplant
The doctor is planning to use the baby's cord blood, plus some bone marrow from the baby (who is now 7 months old).
Chloe will probably be in the hospital 4-8 weeks, and then have daily clinic visits for another 4-8 weeks.
The whole family is going to relocate to San Antonio for this process. we're thinking we'll be there 3-4 months. I have secured an apartment there near the hosptial. Our caravan will leave Sunday and arrive Tuesday in the big city.
We'll keep you updated.
Here's our address and phone info for San Anonio:
Address:
11020 Huebner Oaks # 2514
San Antonio, TX 78230
(210)641-8357
Wednesday, April 16, 2003 11:26 AM CDT
Well friends, if you have read our history, this may come as a surprise. We have changed strategy. We are going to San Antonio for transplant. The doctor there is Donna Wall.
We feel the most comfortable with her and with her plan.
We're not sure about the schedule yet, but it's coming soon.
I must say the past 10 days have been the most difficult of Chloe's journey so far. This decision process has been intense, but we are at peace now about it.
We need for insurance issues to work out. Whether those issues work out or nor, there is no time to waste. Most of the doctors we have spoken with are very concerned that we get Chloe to transplant before another likely relapse.
In the battle,
Trey
Thursday, April 10, 2003 10:01 AM CDT
Michelle and I had a good trip to Duke to meet with Dr. Kurtzberg. Our church sent us off with prayer and a check which more than covered the expense of the trip. At the end of the Sunday service, our pastor asked people to come up and hug us and give toward the trip. As Michelle said, the love and touch of the people was so much more important than the money.
On the way to the airport, we listened to a song called "through it all" (I think) over and over again. It's on the Hillsong "Blessed" CD. The chorus goes like this:
I'll sing to you Lord a hymn of love for your faithfulness to me
I'm carried in everlasting arms, you'll never let me go
Through it all
When we got to North Carolina, we called some friends from Kirksville who now live in Raleigh (the Morgans). They were very gracious offering support and even help finding housing once we get there. Since then, their pastor, Paul Kidd and his wife Kimberly have both called to offer their help. What's great is we know it will not be an empty promise.
God willing, we will go to Duke in a few weeks to begin the transplant process. Michelle will probably go out first with Chloe; then the rest of us will go around the time school gets out. We are hoping someone else can go with Michelle so she can be with the baby.
Michelle and Chloe are going to KC today for more chemo (ARA-C and asparaginase). Chloe will be inpatient until sometime Saturday. The ARA-C is known to cause high fevers, etc., so we appreciate your prayers for our sweet little girl.
The doctors are giving her a 50/50 chance of survival. We so appreciate them. Medicine is a gift from God. We are asking Him to do what medicine can't.
Thank you so much for caring....Trey
Saturday, April 5, 2003 1:11 PM CST
Trey and I will be going to Duke MC in North Carolina on Monday to consult with Dr. Joanne Kurtsberg about Chloe's imminent transplant. Some of her preliminary opinions seem to directly oppose what has been recommended by Dr. Gilman in Kansas City.
It is likely, however, that there is not a "right choice" out there somewhere, waiting to be discovered by us. It is likely that there are just different opinions, and we'll be forced to decide on one of them in an attempt to save our little girl's life.
That said, we are doing our best to cast this care on Jesus and trust Him to lead us in the best possible treatment.
Chloe is feeling more like herself than she has in a couple of months. It was fun to see her spunky and mischievous with the doctors and nurses at clinic yesterday. They had not seen that side of her since she was so sick when we transfered to Kansas City.
Thank you again for keeping up with Chloe's story. Please keep us in prayer.
michelle
Thursday, April 3, 2003 11:22 AM CST
We had our mega-meeting (3 1/2 hours) with Dr. Gilman at Children's Mercy yesterday. I'm glad we went in somewhat educated on the subject of transplants. It was a lot of info. to digest in one sitting.
We went with about a 60-70% chance of having the procedure done in Kansas City. We came home thinking more like 95% plus. Dr. Gilman's specialty is in Graft vs. Host disease which almost all transplant patients face. It can range from mild irritation to life threatening. That, along with the high risk of infection during the weeks following transplant while extremely immunocompromised, are two of the main concerns.
We thoroughly discussed Chloe's transplant options. Unlike most transplant patients, she has the "luxury" of two siblings that are a match for her, and umbilical cord blood from her baby brother that is a match as well. Most of you have heard of bone marrow transplants. Basically that is what will be done except we won't actually be using cells from bone marrow. The stem cells that Chloe will receive will either come from peripheral blood (circulating through the donors body) or from Daniel's umbilical cord blood. Both are good options and both carry their own risks.
The peripheral blood stem cells, having more T-cells than cord blood, may provide more "graft vs. leukemia" effect, possibly making relapse less likely after transplant. On the other hand, this option is also more likely to cause more graft vs. host disease.
Umbilical cord blood would be an easier transplant because there is less graft vs. host disease to deal with. Our understanding at this point is that there is also less graft vs. leukemia effect, increasing risk of relapse. UCB also takes longer to engraft which would leave her undefended longer.
Trey, Chloe and I will leave this evening to drive back to K.C.. We have to be at the hospital at 7:00 A.M. for her bone marrow tests and spinal. Hopefully, it will confirm remission. If so, she will recieve 8-10 more weeks of chemo. before being admitted for the transplant.
Thank you for reading and praying.
Blessings,
michelle
Thursday, March 27, 2003 5:27 PM CST
Chloe had a CBC today. She cried through the blood draw even though there was zero pain involved. She's kind of gun-shy now around health care providers after five weeks in the hospital.
The results are: ANC of 2420! Quite a recovery from 150 on Sunday. Her blast % was 9, but the oncology nurse explained that this is common when the bone marrow is so active. Her NRBC (nucleated red blood count) % was 49. This is an immature red count, which kind of confirms that the 9% blast count isn't bad news.
We don't have to go to KC until next Wednesday to meet wtih Dr. Gilman, the bone marrow doctor. Next Friday, she'll have an LP and bone marrow.
Monday, March 24, 2003 10:42 AM CST
Hi friends. Chloe was discharged Sunday evening from the hospital. We're all home now and very glad. Chloe is still not feeling well at all, but at least we're home. Michelle is also dizzy and sick-feeling.
Chloe's ANC was still around 150 yesterday. She will get a spinal on Wednesday in KC.
That's a quick update. Thanks for checking in and continuing to pray.
Friday, March 21, 2003 8:56 PM CST
Hello again from Kansas City. Yesterday we were very concerned about Chloe being in depression. She wouldn't smile and barely responded to me and Michelle.
Today, she woke up happier. I was able to get her to laugh a few times this morning. Now, some of you are obviously thinking, "Hey Trey, of course you got her to laugh because you are one of the funniest, if not the funniest person I have ever met". Well, thanks, but that's not the point.
The big cure for depression came in the form of all the brothers and sisters and mom and dad being together in the same place. Michelle and I were already here with Amy and Daniel. Michelle's mom brought the rest of the kids. They arrived at noon. Chloe immediately became the happiest camper. She absolutely loves being with all her brothers and sisters.
We're still waiting for Chloe's counts to recover. She'll get another CBC (complete blood count?) in the morning. It would really be great to all be together at home. But for now, being all together in the hospital is also great. We are quickly learning to cherish times like this, knowing they are a gift from God. Just seeing my little girl smile and seeing my children enjoy each other are precious moments not to be taken for granted.
Ephes. 5:15-16
Be very careful, then, how you live--not as unwise but as wise, making the most of every opportunity, because the days are evil.
Wednesday, March 19, 2003 11:10 PM CST
Still in the hospital! Chloe seems to be doing well, but we have to wait for her counts to improve before she can be released. Her ANC today was around 300. As the oncologist said yesterday, "Now we wait for her bone marrow to recover". The chemo suppresses bone marrow function, which causes the low blood counts, etc.
Also of concern is her heart rate. It's been in the 160s and 170s. The doctors haven't figured out why yet. This happened last time she had an infection, but so far the blood cultures aren't showing anything.
Michelle came with Amy and Daniel today. Chloe was SO glad to see them. She likes me, but being with one person all the time gets old. She's been in this hospital for a month now.
Once Chloe's counts recover and her heart rate becomes more normal, she should be able to go home for a while. She'll get another bone marrow test next week or the week after to determine if the cancer is in remission. Assuming it is in remission, the next step is getting her strong and ready for stem cell transplant. That should take place in June.
Again, thanks for checking in and praying for Chloe.
Sunday, March 16, 2003 10:48 PM CST
We hit a new milestone today. Chloe was taken off all pain medication. She's been on dilaudid (sp?) or morphine for about a month. They've been tapering off for a few days. Today, I actually got to take her outside! She had to wear a mask, and I held her every step, but she enjoyed it nonetheless. I put some pictures of this time on our yahoo site
ANC today was 218. Chloe is taking baby steps. She's very weak, but making progress every day. The night nurse just told me they all clapped and celebrated when they heard Chloe got to go outside! The staff here is really great...(like in Columbia!)
The hospital is wired for Internet, and I've been able to spend a lot of time working from the hospital room on a laptop. I do mean a *lot* of time.
Thanks for reading and praying...Trey
Saturday, March 15, 2003 12:19 AM CST
Chloe is doing much better. Her ANC is 418 today. This means she's almost not neutropenic! She's still sleeping all the time, which is good.
This morning she ate a good breakfast and walked to the playroom and back. She is still walking very tepidly, but at least she's walking. Then she went back to sleep.
I've (Trey) been back here 26 hours, and Chloe has probably slept 18 of those hours. Her pain meds are being reduced too. One thing that's happened is she's gained 5 pounds in about 6 days. She's pretty swollen. There are a lot of factors involved in that: extra fluids for the chemo, extra lipids in her IV, etc. They've now taken her off the extra stuff, so we should see some reduction soon.
Tuesday, March 11, 2003 8:02 AM CST
Michelle says yesterday was a pretty good day. Chloe is sleeping much better. She stood up twice yesterday for 10 or 15 minutes facing Michelle, who was sitting. She was playing with a Leap Frog, which is an interactive book thing. She also took a few steps. It's a big thing for her to stand and walk, because she's been in so much pain for a few weeks now.
Her hair is going bye bye again--proof that the chemo drugs are doing something.
Chloe's ANC is zero. ANC is an index of infection fighting ability. It's zero because the chemo has wiped out her white blood cells. Tomorrow, she will get a 24 hour IV dose of methotrexate, which is a drug which wipes out rapidly diving cells-- preventing them from multiplying by depriving the cells of folic acid. Last summer, the main side effect was a lot of itchiness all over.
We're in the process of researching what facility to take Chloe to for the stem cell transplant process. The hospital she's in now does transplants with a great doctor, but we don't want to automatically assume that's where it will happen. The transplant process will probably begin in early June.
On the home front, Bethany and Mary are showing grace beyond their years, and the others are also doing well. Our church family is also helping a great deal with meals five nights per week, and lots of other support.
If you're praying for Chloe, thank you and please continue.
Trey
Saturday, March 8, 2003 7:42 PM CST
Hi. Michelle arrived with my mom around 4 p.m. today (Saturday). Chloe has been sleeping on Michelle pretty much ever since. Chloe didn't sleep much at all for the past two nights. She had two different bacterial infections, both of which are being treated. One of the infections was probably the cause of the high heart rate and low blood pressure. Chloe is simply exhausted, and so is dad. When she gets over-tired, she goes to sleep and jerks herself awake (with pain) within 30 seconds. Michelle has the touch to be able to minimize the jerk so that Chloe can relax.
This has been a very emotional week for Michelle and I. Some of it is from seeing her in pain, and some of it is from having to start to plan the future (place for stem cell transplant, total body radiation, risk of relapse, etc). Tomorrow's burden is too much to bear today.
Well, we know God is good anyway. Psalm (145, 146?) says "The Lord is righteous in all His ways and kind in all His deeds". We trust Him.
Saturday, March 8, 2003 12:00 AM CST
Trey is spent and I'm running back to K.C. a day and a half earlier than planned. Chloe is in a lot of pain again, abdominal, neck, legs, arms.... Blood presure is low, heart rate is high.
Many questions, few answers.
Please pray that she not suffer!!
Saturday, March 8, 2003 12:00 AM CST
Trey is spent and I'm running back to K.C. a day and a half earlier than planned. Chloe is in a lot of pain again, abdominal, neck, legs, arms.... Blood presure is low, heart rate is high.
Many questions, few answers.
Please pray that she not suffer!!
Saturday, March 1, 2003 10:26 PM CST
Progress!
- Chloe was able to sit up for a while today
-Michelle said Chloe smiled a lot this morning, was more herself.
- She was taken off oxygen (first time in 12 days).
- Her pain medication was lowered.
- She received a blood transfusion, as the chemo knocks down her good cells as well as bad.
Thursday, February 27, 2003 9:59 PM CST
The children were here this afternoon. It was good to see them. The Andersons from church brought them. What a blessing. Chloe wasn't feeling too great, and didn't acknowledge any of the other kids other than yelling Amy's name when she started to leave. It was hard, but it was good for the other kids to see where Chloe is staying. When they left, Josiah and Amy both cried. That was hard to see to, but somehow even that will be good for them.
I think Chloe is still exhuasted from having fevers for 10 days, plus the necrosis (packed dead cells in her bone marrow). She is sleeping quite a bit now, thankfully. Last weekend was simply awful for her. Every time she would go to sleep, within 20 seconds she would shake violently and wake herself up. This went on for a couple of days, and really wore her (not to mention me) out.
The daily chemo (today is day 2) is occuring at night after she goes to sleep. It's kind of nice for her to sleep through it. It's all done IV, so it wouldn't be too bad during the day either.
Thursday, February 27, 2003 12:32 AM CST
Hi! It's Thursday. Chloe's new chemo began last night. She slept all night, which is good for her and her dad! She also slept most of the morning in my arms.
Though not 100% certain yet, the initial indications are the baby's cord blood IS a match for Chloe. (When Daniel Ryan was born September 6, the blood from the umbillical cord and placenta was saved and stored in a cord blood bank in St. Louis. We hoped we would never need it, but here we are.) This is great news. They will have to transport the blood here and retest.
Scot and Michelle Anderson are brining the other six children to visit. They will be here shortly. They haven't seen Chloe in ten days, so they're pretty exicted. More later.
We are praying for a quick remission and minimal side effects (no nausea, organ damage, etc.).
Proverbs 3:5-6
Trey
Tuesday, February 25, 2003 10:21 PM CST
Dear friends,
Chloe has relapsed. In short, that means the leukemia is back.
She is at Children's Mercy hospital in Kansas City. She has been there since Wednesday, February 19th. We took her to Columbia on Monday, the 17th with severe pain and fever. Our pediatric oncologist in Columbia moved away in November. We were at a point where we needed a face-to-face oncologist, so we transferred to KC on Wednesday. Chloe and Michelle were flown to KC from Columbia.
Here's what we're facing now.
Chloe will be in the hospital for at least a month while on her new chemo treatment. We don't know how long it will be. It could be a even a few months or more.
Once she is in remission (and there is gurantee she will go into remission apart from God), they will begin preparation for a stem cell transplant (also known as a bone marrow transplant). This transplant process is probably a few months away. I don't want to say too much about this except that this is *very* serious. The doctor told us that there is a 60-70% survival rate for children who are at this phase of treatment and relapse.
God is faithful. Harold and Lori drove me home so I could talk to the children tonight. There was so much peace in the house when we walked in. The children are doing wonderful.
I told them about the relapse, and about what we will be facing in the months to come. Then we prayed. I wish I had a tape recorder going, because the glory of God was there, especially when my daughters prayed. Amy (age 10) was continally crying out, "God, I know you are faithful!. Give us your grace Jesus". The strength and beauty and poise they are walking in is striking. It's the grace of God at work.
We are thrusting ourselves upon the mercy and wisdom of God. There is honestly no way to administrate the next few months from a human standpoint. Chloe is in a hospital a three hour drive away from home. There are six children at home, one being a six-month-old baby. But God! He knows what the days will hold, and He will take care of every need. He knows what we need before we ask (and we don't know what to ask).
Saturday, February 8, 2003 6:50 PM CST
It's been a while, so here's a new update on Chloe.
At our last office visit in Columbia, it was determined that Chloe has grown and gained weight. So, they increased the volume of her medication. This increase has affected her quite a bit.
The last three weeks have been difficult, but not as bad as it was just a month or two ago. The medications seem to really affect her nerves. Sometimes she complains of pain when someone just touches her skin. And we've had entire days of whining and screaming and wanting to be held all the time.
She's getting back to her regular self now. It's always great to see her happy. We'll start another three-week round on Tuesday, Feb. 11.
Thanks for visiting this site and standing wth us.
Thursday, January 30, 2003 at 02:18 PM (CST)
Chloe's white counts are down. Her ANC is around 750. Anything below 1000 isn't good, so she won't be going to church for a while. She has a low-grade fever and some cold symptoms. We almost got sent to the hospital. Instead, she will be treated with antibiotics.
She's been feeling great and her hair is really growing.
At her last appointment in Columbia 10 days ago something interesting happened. They sedate her to spare her the trauma of a spinal tap. As she began to regain consciousness, she whispered to Michelle, "Pray for me.".
Thanks for praying for her.
Sunday, January 12, 2003 at 08:36 PM (CST)
Hi. Well, we're back from Columbia. Chloe had a fever on Friday, and I (Trey) took her Friday night along with Amy (our 10 year old). Amy was great and stayed the whole weekend.
All of the tests were negative (whis is a positive thing!). Her temperature was up to 104.4 yesterday. She hasn't had a fever since 4 this morning. They release her about 3 p.m.
Our nurse told me today she wishes she had a video of Chloe taking medicine. That means she liked having Chloe as a patient. We're just as happy with the nurses in Columbia as they are with having Chloe as a patient.
We have a new family photo site. You have to put up with ads, but hey...
Heres the link. Photos
Saturday, December 28, 2002 at 09:46 AM (CST)
We just returned from the hospital with Chloe! Her infection must have been viral. She seemed to enjoy laying around the whole time and watching videos (over and over). She charmed the nurses with "my name is Chloe" when they asked her name.
Thursday, December 26, 2002 at 11:01 PM (CST)
Chloe started running a high fever today (over 101), and we had to admit her to the hospital tonight. Michelle is there with her now. She is at Northeast Regional Med. Center in Kirksville. She has to have no fever for 24 hours straight before they release her. It's a little nicer being able to put her in a local hospital. And it's nice having a personal friend as our physician too! The hospital isn't nearly as nice for Chloe (no playroom). But it will be better for the family to be close together instead of 100 miles apart. Thanks for continuing to pray with us.
Trey
Thursday, December 12, 2002 at 01:52 PM (CST)
We reached a milestone this week. Chloe's appointment in Columbia (95 miles away) was the last weekly visit! We will now go to Columbia every three weeks. Chloe is officially in the "continuation" phase of treatment. This phase will last about another year and 7 months.
This phase is not as intense, but it's still pretty intense. She will still be on steroids for five days every three weeks. She'll get an injection of methotrexate in her thigh every week. And (perhaps most of all) she will get methotrexate in her spine every six weeks. This spinal medication is in place of cranial radiation. Please keep this in your prayers, as this medication can cause brain problems.
As you can see from the new photo, her hair is making a comeback!
Monday, December 09, 2002 at 01:45 PM (CST)
This is a bunch of journal entries from June through November...this used to be on another web site, and now is here. From now on, we'll use this site for updates.
Posted: Thu Jun 13, 2002 6:30 pm Post subject: Chloe Allemang
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Trey here. Kathy suggested I post this on the forum so you all know what's going on with Chloe.
Here's an update on Chloe (our #6 child who is 21 months old).
She has been diagnosed with leukemia (ALL, T-cell -- for the medically
astute).
She's in the first stage of chemotherapy. So far, the results have been
dramatic.
Her temples and eyes were very swollen. Her left eye was bulging out to such an extent that she could not close her eye. She looks normal now, praise God!
We are believing God for complete healing and restoration. We are also using medicine.
She was in the hospital Wed. thru Sat. last week. We went back to the doctor in Columbia Monday, and she had to have blood.
The chemotherapy kills everything in it's path (white blood cells, red blood
cells, leukemia (blast) cells).
As you know, the white cells are the body's defense against infection. The
chemo kills these cells, which increases the risk of infection. If Chloe's temperature ever goes above 101.5, we have to take her to the hospital in Columbia right away to treat the infection. It's an automatic 2 day inpatient stay. So please pray with us that these type of infections will be minimized.
On a natural level, we are taking many precautions to prevent infection:
* hand washing with antibacterial soap before touching her,
* lysol everywhere,
* no more Helen (as in Keller, wandering around the table eating off
everyone else's plate).
We are making frequent trips (twice weekly) to Columbia, MO, which is about 100 miles south of Kirksville. On Thursday, June 27, she is scheduled for a 4 day hospital stay for more testing and treatment.
Our friends at CLF haven proven their valor and friendship again. When we
returned from the hospital Saturday, the lawn was mowed, the house was
cleaned and sanitized, food in the fridge, etc. Lori Forbis has been arranging meals and other stuff for us. We have truly been overwhelmed.
We are still very tired. Michelle is 6 1/2 months pregnant....selah....
Chloe is obviously too young to understand what's going on. But she is doing well. Today was a difficult day (lots of fussing and crying). But, to put things in perspective, I read today about a pastor and his 17 year old
daughter in Indonesia who were killed in a bus bombing performed by Muslim radicals against Chrisians. (www.persecution.net) Chloe is going to
overcome this illness. Then she can grow up to love Jesus -- and become a martyr, if God honors her so.
If you are live outside of Kirksville, you might want to get the tape of the
prayer meeting from June 8. Tom let Michelle and I share for a good while
about what's up, and how good God and His people have been.
Our times of weeping during Chloe's hospitalization came multiple times. But there were two common threads. One was weeping with Chloe over her pain when we could not comfort her. Every parent in that hospital probably did that. But the other times we wept were when we realized what wonderful friends we have. Kris and Martha showing up the first night...Tom Bedford coming at 1 a.m. to pray with me...He and Andrea just being with us when we got the bad news...Duc taking time from his day to be with us...Harold and Lori spending much time with us...my mother and father....Paul Petry taking his day off to be with us...Steve coming at 10 p.m. with faith and the Word of the Lord...on the list goes...The hospital staff commented on how amazing our "support group" was....amazing indeed.
We continue to fight the good fight, and are glad you are fighting with us.
We will keep you updated.
Thank you for your notes of encouragement. They mean a great deal to us.
Trey
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Posted: Fri Jun 14, 2002 10:29 pm Post subject:
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thanks, Trey. I appreciate the fact that you did this. I know your strength and time are both stretched. You help all of us so much with your faith.
Posted: Wed Jun 19, 2002 11:19 am Post subject:
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update: 6/17. Monday night:
I just got back from Columbia with Chloe and my friend Harold. He went with me last Thursday and today to allow Michelle to remain at home. We left home just before 6 a.m. and returned at 4:30 p.m. Today, they checked her blood and gave her hemoglobin for the second Monday in a row. The blood transfusion takes about 3 hours, and the trip is just under 100 miles, one way.
Things are going well. Chloe has been doing great. She's starting to show signs of taking prednisone. Her gut is enlarged and her cheeks are swelling. But she has had no nausea, and has actually gained a little weight. Thursday, they will do another spinal tap and chemo.
People from church have been bringing us dinner since we returned a week ago Saturday. That has helped a great deal. We're still pretty tired, but the reality of what we're facing is setting in now. I'm starting to work again. God is good. I've gotten notes from people around the country I've never heard of to tell me they're praying.
Tuesday: Ben (our 4 year old) got sick today, so we had to isolate him from Chloe. Her white blood count is officially at the "at risk" point for infection, so we can't have Ben coughing around her. Angela Millican got sick Sunday, and we had to get rid of her for a few days. I call this our "one strike and your out" policy.
Next week on Wednesday, she's scheduled for a 2 or 3 day hospital stay for more testing and a new round of chemo.
_________________
Trey Allemang
Joined: 23 May 2002
Posts: 25
Location: Pittsburg
Posted: Thu Jun 20, 2002 6:26 am Post subject: praying for you all
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Just wanted to say that we here in Pittsburg also praying for you guys, Trey. Having the upadates on how Chloe's doing is really great. We appreciate you and are praying for your family.
Keira
Posted: Mon Jun 24, 2002 2:34 pm Post subject: Chloe update 6/24/2002
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Michelle wrote this today:
Dear friends,
This is the latest on Chloe. Deepest thanks to all who are praying fervently for her! Also, to our church family that has so strengthened us with your love and support, thank you! Your friendship means everything to us!
She is responding well to the Chemotherapy so far. She hasn't been sick, but did lose most of her hair this week. The steroids have her puffed up and looking chubby. She is eating and drinking really well as the steroids also give her quite an appetite. She has gotten used to her PIC line (permanent catheter in her arm) and doesn't fuss too much now each day when we have to flush it.
Last Monday (June 17) she had her second red cell transfusion. At that time, her platelet count was very low (19,000) so they were planning to transfuse platelets on Thursday when we took her back. But when they did the lab work on Thursday, her platelet count was at 136,000!!! So, no transfusion was needed. Her red and white counts were also up. One nurse told me that probably means she is in remission. How I wish that were the end of it. But the treatment calls for two more years of chemo.
This week we will check her into the hospital in Columbia on Weds. morning and be there 3 - 4 days. Wednesday will be a long day of tests, new treatments, and procedures. Please especially pray for a sense of peace and security over her this week, binding fear and insecurity. We welcome visitors during those days. It was such a blessing to us before to have a steady stream of friends supporting us there. You can call us on our cell phone: 349-0537
As you continue to pray with us against the leukemia, please also agree with us against negative long-term side affects from all the brutal drugs on her little body (brain, liver, kidneys, lungs, heart, ovaries, etc.). The Name of Jesus has authority over these drugs! I have seen before my eyes a man so stoned he couldn't tell us his name until I rebuked the effects of the drugs in the Name of Jesus. Then, in his right mind, Ray told us his name, heard the Gospel, gave his life to Jesus, and gave us directions to take him home. JESUS is the Name above every name!
Times like these are an incredible opportunity to get to know God more. I'm thankful for that. It's an opportunity to find joy and gratitude in small things that might otherwise be taken for granted. What an opportunity we have in these days to "taste and see that the Lord is good!"
Here are the hospital's before and after pictures of Chloe.
Before:
After (after 4 days of treatment):
_________________
Trey Allemang
Location: Branson
Posted: Tue Jun 25, 2002 9:30 am Post subject: abcdefghijklmnop
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It is tuesday the 25?? is that right??? when I checked the Kirksville forum. This came as quite a shock to me . Trey and Michelle, I love you guys. I sat here at this computer and wept at how Good God is. I don't really have anything awesome to say, But Branson is praying for ya'll.
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jOsEpH
Posted: Wed Jun 26, 2002 9:47 pm Post subject: in Columbia
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Hi from the hospital. It's 9:30 p.m., and Michelle just got Chloe to bed. It's been a good day. Harold, Chloe, Mary and I left KV at 7 this morning.
Chloe's blood work looked great. All of her counts were almost normal.
The bone marrow test showed specules (tiny bone fragments), which is great. That means the cancer is in remission, praise Jesus! They put her asleep with a sedative when they do this procedure. When she woke up, she spoke in slow motion. It was really funny. She wanted her shoe off, so she said "sssssss---shoooooooooooooo". Then, sssssssssssssock.
She couldn't eat for 8 hours before the procedure (the bone marrow test and spinal tap), so she was getting hungry just before. If you didn't know she was crying for macaroni (omi), you would have thought she was crying for mommy. But I knew, cause I'm smart.
Anyway, after she woke up, she ate all the macaroni she wanted.
Life in the hospital is pretty much about keeping Chloe from pulling out her IV. If you think that's easy, come give it a try. More to come sometime. I'm going to walk Michelle out to the car. She's staying at the Ronald McDonald house, which is just a couple of blocks from the hospital. I'm staying with Chloe. I'm in a small room room with a computer. It wouldn't let me use the Internet, but I hacked my way into it (shh, don't tell).
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Trey Allemang
Location: Fire Band
Posted: Wed Jun 26, 2002 9:57 pm Post subject: Mr. Hilarious
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Hey Trey,
That rhymes, huh? Anyway, I just wanted you to know that I think your covert email was pretty funny. It's a good thing you're "smart" or you may have mistakenly sympathized with Chloe about the wrong thing:lol:
What a great dad. We all need dads like you, dads who understand what we're mumbling through tears and hunger pangs. Keep up the good work.
Sister Hannah
Posted: Wed Jul 03, 2002 12:43 am Post subject: July 2nd update
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It's Tuesday July 2nd. We returned Saturday at 5:30 pm after four days in the hospital in Columbia.
Chloe's bone marrow test showed some leukemia cells, but they appeared to the pathologist to be weak and dying. After the testing, she had a 24 hour infusion of methotrexate(sp?). This is a drug which kills leukemia cells by depriving them of folic acid. When the cells divide, they just die. Then, she was given a "rescue drug" to keep her good cells from dying. She slept all night every night in the hospital.
Her swelling has gone down substantially now that she's off prednisone. Her main side effect of the chemo has been itching all over. The potential side effects of all the drugs can be upsetting just to read about (brain damage, heart damage, kidney damage, weak bones, etc.). But God is greater than all this. We are praying and believing that all the leukemia will die, and there will be no relapse. Michelle frequently quotes Jesus' words to Jairus: "Luke 8:50 "Don't be afraid; keep believing, and she will be healed."
Chloe is simply a very sweet girl. She's just plain fun to be around (and she knows it!).
One of the doctors commented again last week about how astounding it is that we have so many friends. This is based upon the many different people who have come to spend time with us.
The power of friendship is still at work in Kirksville. Harold and Lori have been awesome coordinating help. The meals have helped so much.
We're going back to Columbia tomorrow for more testing. Also, Michelle is going to see an OB (baby doctor) there in case she has to deliver in Columbia. Michelle is very tough, but she is feeling *very* pregnant. The baby is due August 29, but could come early.
The other children are also doing well. During the hospital stay, they were all able to come see us at different times. One of our light moments came when some of us were in the hospital room. Michelle asked "where are the boys?". As the word "boys" passed through her lips, the boys zoomed by in the hall with Josiah pushing Ben very fast on a tractor wagon thing.
Perspective is important. One night when I was starting to complain in my heart about having to sleep again on the hospital fold-out chair, I walked by the room of a little girl who lives at the hospital. She was crying for help with no one to help her. Michelle told the nurses she needed help. The nurses there are raising her. There countless children like this little girl all around us who need our touch if we are not consumed with our own trite problems.
I'm sure glad we can trust God. His grace *really* is sufficient.
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Trey Allemang
alabanzar
Joined: 23 May 2002
Posts: 23
Location: Fire Band
Posted: Wed Jul 03, 2002 8:30 am Post subject: Back to reality
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Wow, there go all my issues for the day. Suddenly, early morning prayer doesn't seem like that big of a deal. And fasting is reasonable service.
Thanks for bringing me back to earth, Trey. You always were good for a good old-fashioned reality check!
How about you start posting a new message on Chloe? This one's getting kind of long to scroll through. But I guess that's not a big deal, either compared to little girls with no help who live in a hospital....
Sister Hannah
Posted: Fri Jul 12, 2002 4:54 pm Post subject:
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Friends, here a couple of links with Chloe info and family pictures (click the blue text):
This is Chloe's page in a web site which exists for leukemia patients
A family web page
This battle is definitely a marathon, and not a sprint. We can't let up.
We found a mailing list this week which exists for the kind of leukemia we're dealing with. It has been extremely helpful, both for practical wisdom and for support. You can't really know what it's like until your in the midst of this kind of battle.
Here's the link for the mailing list if your interested. Watch the postings for a couple of days and you will gain a lot of insight.
http://listserv.acor.org/archives/all-kids.html
Thank you for standing with us.
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Trey Allemang
Molly Nickerson
Posted: Sat Jul 13, 2002 9:44 am Post subject: Thoughts from Michelle
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Friends, Michelle has been writing a little. This will give you a window into our little world....Trey
It has been 4 weeks today that our little Chloe was diagnosed with T-cell acute lymphonic leukemia. For 6 weeks prior to that we had been seeking a diagnosis. Looking back at the "before" photos reminds us of how sick she had gotten before treatment began. It's good to remember that in the face of chemotherapy side effects that we've been experiencing. There is always something to be thankful for in every situation.
I'll never forget that Thursday evening as we were called into a conference with the doctors. They had already thrown around the term "leukemia" so that wasn't a big surprise. Actually, that particular word, "leukemia", had been bouncing around in my mind for a week or more prior to diagnosis. But what was hard to hear in that meeting was that it was the tougher, more rare, and lower cure rate "T-cell" brand we were dealing with. Our pediatric oncologist (I didn't even know what that was 4 weeks and one day ago) took great pains to explain simply what we were facing. I remember thinking, "This is taking too long. It can't be good news." I had already made up my mind that I preferred the B-cell type and expected it to be so. I guess that's where Josiah gets that trait... thinking he can declare something and it will be so. Anyway, that was blow #1. Then as the doctor continued to explain the 2 1/2 year treatment protocol (blow #2), the list of drugs and their side effects (#3), and radiation to the scull which would most likely cause brain damage and tumors (#4), hot tears leaked out of my eyes and I fought hard to maintain composure. Our dear nurse, pushed a box of Kleenex across the table to me. I couldn't look at her. I couldn't ask one question. I knew I'd lose it big time. A fog fell around my mind as the doctor talked on. I'm glad Trey was there asking intelligent questions, even if, as at one point, it was about something that had just been explained. I was going somewhere else. Or maybe it was time to wake up. At any rate, I wasn't appreciating reality at that moment. I wanted out of there and I didn't want to talk to anyone.
Moments later I was pushing Chloe around the halls in her stroller (the thing she likes best when not feeling well), and searching for a place to let loose. Finding an empty room, I let the dam break. I hurt so much for Chloe. She's so little. So precious. So perfect. She doesn't understand any of this. My personal cry session didn't last but a few minutes. I emerged from that room to meet one of the residents. Red eyes and nose must have given me away (duh) and he kept asking if I was okay. I wouldn't look at him, but tried (lying) to assure him I was fine, or would be. I had been in a lot of unexplained pain all week with the pregnancy and it was very difficult to even walk. He tried to get me to go down the hall to the OB ward and get checked out by one of the docs there. I wouldn't. He came back in a little while with one of those big hospital mugs full of ice water and handed it to me saying he had checked with and OB and decided that I was dehydrated. They were right. I've watched my water intake more closely and haven't had that problem since. I'm thankful for that.
Benjamin had made the trip with us on Wednesday. He had appointments with his eye doctors in the same hospital. The social worker assigned to us arranged for me to stay at the Ronald McDonald House while Trey stayed at the hospital with Chloe. Benjamin was my little companion and small comfort the first night and I missed him a lot Thursday night when I returned to my empty room. That was one of very few times I was alone. Friends came pouring into the hospital from the first night on. Kris and Martha first. Just their presence was such a support. Tom came later and spent several hours with Trey in the early morning hours talking and praying. He brought Andrea back with him the next day and we went to lunch while Grandma LaRoyce stayed with Chloe. Harold and Lori were there Thursday when we got the final diagnosis, as was Duc. So many others stopped by for a little while. The Floyds, SooHoos, Paul Petry came Friday and was such a help, as he has been from the beginning. He brought my older girls with him. Sherry came with him again on Saturday. What a tremendous blessing to have friends!
As we sat in the semi-dark lounge later that Thursday night, I expressed concern over the other children and the new baby and cried frequently. Trey and my friends just let me vent. But then we began to pray. Venting is fine and has it's place, but praying is better! I began to gain perspective. Not earthly perspective, but eternal perspective. I was reminded of prayers that I had prayed so fervently. Prayers that I absolutely MEANT, and knew at the time they would cost me. In that moment, I knew I still meant those prayers. Suddenly I saw this not just as an attack on Chloe, not just as an attack on the Allemang family, but even more as an attack on His church! But I also saw that one way or another through this battle that God would be glorified, His Kingdom would expand, and His church will be beautified. I don't know how. I just know. That does not necessarily lessen the pain I feel when my precious little girl hurts or won't eat, or feels angry and confused by what is happening to her. It still hurts...bad. And I cry more often than I ever have. But I've decided that I have to access a place in God where I can live above fear and uncertainty. I have to PUT my hope in God. It doesn't just float there at times like this. Times when you read through the protocol prescribed for your baby and the cure seems potentially more devastating than the disease itself! Put your hope in God, oh, my soul! The name of Jesus is a strong tower. The righteous run into it and are safe! The Name of Jesus is above the name of leukemia! Above the name of methotrexate! Above the name of doxorubicin! and all the other toxic drugs they will pump into my beautiful, happy, bright little baby girl. Jesus is His Name. I love that name more than any other.
This week we were hit broad side, or so it felt. At diagnosis, we were told (I think by a resident) that since there weren't any leukemia cells found in Chloe's spinal fluid that we wouldn't have to put her through cranial radiation. You can't imagine what a relief that was since our doctor had already stated matter-of-factly that at her age it would most likely mean tumors and brain damage! We grabbed that bit of good news like it was thrown to us as a life raft in a tumultuous sea. Well, the air went right out of that raft on Tuesday. The nurse mentioned to Trey that the dr. was trying to decide whether to do radiation on schedule, this Fall, or wait a year because of Chloe's young age. Trey relayed this info. to me over the phone on his way back from Columbia. I was having an okay day till then. I was actually trying to put up curtains in my dining room. All I could do after that was find a place to cry out to God. I didn't think I would be interrupted in the shower (though it's been known to happen even there). All I could hear in my mind was, "tumors, brain damage". I desperately needed someone to help carry this one. It was too heavy! I wanted to run find a friend, anyone, anywhere. That evening we did find Doc. Wendell, and Martha, and Paul Petry (our pediatrician friend) happened to come over for an unrelated reason. It helped to have talked with them. Paul offered to come with us when we go talk to our doctor about this decision. Again, I'm thankful for friends. Ultimately, the decision is in our hands not the doctors. Wendell encouraged us to be lead by the voice of God, not by fear. I confessed that I was unsure I could be objective. We are talking about my baby! But I know this is life and death and I must hear God. Maternal feelings must succumb to the voice of God. My faith does not rest on my ability to hear Him. It is settled in Him, as my Good Shepherd, and His ability to speak so I, His sheep, will hear. He will gently lead those that are with young.
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Trey Allemang
MichelleA
Joined: 13 Jul 2002
Posts: 11
Posted: Mon Jul 15, 2002 11:44 am Post subject: Chloe update
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Monday, July 15
Chloe's appetite has dropped off since her last hospital visit. The past few days she has hardly eaten at all. Then, last night we discovered that we had been giving her expired milk! Nothing like making a sick kid sicker! Ugh! I kicked myself all the way to the store.
Yesterday I thought her eyes looked funny, especially the left one. She was blinking weird. Something like that would go completely unnoticed in a healthy child, but with leukemia every little thing is under a magnifying glass. Your heart pounds a little harder when they complain of an ache or pain, and especially if they get a fever. That was the case at 2:30 this morning.
When I heard her over the monitor, I bolted awake with the thought, "Oh God, she hasn't been doing that!" Trey got up with her and I prayed my way back to sleep. Forty-five minutes later I awoke again sensing Trey was not back in bed yet. Chloe had a low grade fever, but was wide awake and wanted to romp. Trey went back to bed and I took over. At 5:00 I finally got her back to sleep. Ordinarilly, times like that would make you a little more tired the next morning, but the high stress that comes with leukemia really takes a bigger toll on both of us.
I'm so glad Trey and I have each other through this. We are making it a priority to "stay married" and connected to our other children through this. It's a lot more effort than it used to be.
Tomorrow she's scheduled for another 4 day hospital stay and lots of chemo, spinal tap, bone marrow test, painful shot in the leg, etc.. Please pray for her and the doctors, for no adverse side effects or reactions, now or later!
Her temp. is about normal this morning and she ate a few bites of cereal. Our other children will be staying with the Burbee's this week. Weds. is Mary's 14th birthday. Anything you can do to make her feel special in our absense would be appreciated. She's on the forum if you can send her a note. We'll take her to lunch today.
Thanks to all who pray!!
michelle
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Michelle Allemang
MichelleA
Joined: 13 Jul 2002
Posts: 11
Posted: Sat Jul 20, 2002 9:30 pm Post subject:
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We are back from the hospital and have completed another masive dose of chemo. drugs. Chloe was pretty sick Weds. night . Times like that, when she is really suffering, are extremely hard emotionally. She was crying, then I started crying and appologizing to her that she has to go through this. She stopped crying, looked into me eyes, smiled and said, "Mommy, Mommy." Then a couple of moments later through up all over me. I was just glad she felt better after that. She's an extraordinarily sweet little girl.
Her doctors have officially declared her in "remission". What that means is that the first phase of the chemo has done it's job and the leukemia is no longer increasing, but decreasing. The problem is that there isn't a way to determine just how much leukemia is left in her body once it drops to under a million cells. All the docs. can do is assume it's still there and keep blasting away at it...for 2 years. The protocol she is following is extremely aggressive because of her "high risk" status. I firmly believe these drugs will do their job.
What we need prayer for is continued protection over her body against the severe potencial side effects from these drugs. If you are interested in knowing the particualars you can let me know. Otherwise, suffice to say that her "quality of life" would not be very "quality" if these side effects are not kept in check. As the song goes, Chloe "has a destiny I know she will fulfill!" She needs a strong body to do what God has called her to in the earth.
As we drove home today, we were listening to a Bible tape. When Jesus told the disciples to cast the net on the right side of the boat and they would find a catch, they obeyed. They caught so many fish,153, yet the net did not break. Apparently, it was an amazing thing after receiving such a blessing as 153 fish at one time that the net didn't break. I may be stretching things, but at times like this, your faith grabs whatever it can. My mind got stuck there as the narrator kept reading. It seemed there was something there for us. Then I thought that perhaps I could look at the chemo. as the blessing and believe that it will do it's job without causing Chloe's little body to "break". Yeah, her net won't break under the weight of the blessing! Her net won't break. If that's a little "out there" for you, I understand. But I'm Chloe's mommy. Mommies can have "out there" faith.
I'm so thankful for our dear friends that pray for us, help so much with these hospital stays, clean our house, and bring us food. The church works, you guys. The hospital staff and other hurting parents are seeing what a strength you all are to us. The comments get back to us.
We grieved this week for children not our own. There is always a situation worse than your own, you know. Little Noah got hit by a semi. His dad, David, is hurting tonight. The doctors say Noah's brain stem is crushed and he'll be a "vegetable" for the rest of his life.
The family of a six-year-old twin girl is aching tonight after losing her to a train wreck. Her mom and 3 siblings will be okay, but she didn't make it. We cried with her grandma.
There is always something to be thankful for...no matter what. I'm thankful for the battle.....that it isn't over.
michelle
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Michelle Allemang
MamaKathy
Joined: 24 May 2002
Posts: 78
Posted: Sun Jul 21, 2002 10:18 pm Post subject:
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I'm grateful tonight for technology that keeps me instantly connected to the people I love. And I'm thankful for the shelter of God's wings and the promise of His love. And I'm challenged by the depth of faith I see in Trey, Michelle, and their children. Thanks for sharing your thoughts, hopes, fears, and faith.
Trey
Joined: 04 Jun 2002
Posts: 19
Posted: Sun Jul 21, 2002 11:15 pm Post subject: Chloe
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Hi.
As Michelle stated, the leukemia is in full remission. This means the bone marrow test from Wednesday showed no leukemia cells. Thank God for that! This is exactly what the doctors hope for at this stage (approximately 6 weeks from the beginning of treatment). However, as the nurse stated, our methods for detecting leukemia are still crude. So, they think the leukemia is still there, and keep treating it.
Chemotherapy is actually a barrage of drugs to kill leukemia cells. As Paul Petry told me, it’s poison. That’s why we ask you to pray against harmful side effects of the drugs, aye?
One of the drugs Chloe is taking now is prednisone (a common steroid). She will take it in very high doses for five days at a time every two weeks for about the next two years. The high doses can cause extreme emotional swings in children (something to pray about). Chloe is on day four of this round, and is doing pretty well. I know Michelle and I have both said this before, but she’s just a wonderful baby.
Another side effect of prednisone is increased appetite. In Chloe’s case (as most leukemia patients), that’s a great side effect. We need her to eat like crazy while she’s on it. When she’s not on it, her appetite wanes. That’s bad. During this round of prednisone, her appetite has increased, but not very much.
For the next 19 weeks, she will get a very painful injection into her thigh muscle. She received the shot this past week while she was still unconscious from the bone marrow test. It was after receiving this shot, and a bunch of other chemo drugs that Chloe threw up last week.
The oncology (cancer doctor) nurse told me the next phase of treatment is the most difficult. Basically, this is when a lot of the drugs start to “pile on” each other and make the patient feel horrible.
We’re not “believing” for this to happen. However, the reality is the battle is getting more difficult. We just returned from the hospital late yesterday afternoon. Today (Sunday), Michelle and I stayed home from church to take care of her. It really was a two-person job. Once we got her down for a nap, I caught the last 30 minutes of church.
You know, I’m really not complaining. I love being able to help take care of Chloe. Let me share with you a story from the hospital. One middle of the night, she wasn’t sleeping well, and I had been rocking her and singing to her and praying for her. She had been scratching her scalp (itching side-effect of the methotrexate), and I could tell she was in a lot of discomfort. She couldn’t relax enough to go to sleep. I was able to put her in bed (only because I told her I was going to change her diaper, otherwise she would not let me put her down). After I changed her, I got out a wipe and began to gently rub her head with it. She liked that. I continued that several minutes until she went to sleep. She won’t remember that night, but I’ll treasure it for the rest of my life.
Today, when I was putting her down for a nap, I did the same thing as I rocked her. Taking the diaper wipe, I passed it over her head and arms. She loved it. When I got to her feet, the emotion of the moment was too much and I wept. Oh, it is a great privilege to serve this little girl! Thoughts of Jesus washing the disciples’ feet, and Mary washing His feet and my intense love for Chloe were swirling around in my mind in that moment. Let us all have that same sense of privelege in serving Jesus and His people in the earth.
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Trey Allemang
MamaKathy
Joined: 24 May 2002
Posts: 78
Posted: Mon Jul 22, 2002 10:34 am Post subject:
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This was an awesome encounter, Trey. Thank you for sharing it. I'm sure you guys are keeping journals like this for Chloe to read when she is older. It will be a great encouragement to her in the call on her life.
MichelleA
Joined: 13 Jul 2002
Posts: 11
Posted: Wed Jul 24, 2002 12:13 pm Post subject:
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Another dose of chemotherapy yesterday. She was monitored for an hour and seemed fine so we left for home. She threw up in the car in Macon, but seemed to feel okay and was happy.
She's not sleeping well at all. The drugs make her twitchy and jerky. I think she wakes herself up. Then it is extremely difficult to get her back to sleep. We are up for hours each night. She wants only to be rocked and held. I know she needs extra security, but this is taking a toll and I don't see how we can keep it up. Especially when the new baby arrives.
Today she is disagreeable and cranky. Nothing makes her happy. I'm sure part of it is from being over-tired.
When I do sleep, my dreams are full of hospitals, drugs, and taking care of Chloe. Sometimes I wake up in a panic thinking I've forgotten to give her one of her medicines. I never have forgotten, but it's a challenge to stay on top of her ever changing med. schedule.
I need to go try again to get her down for a nap... for the third time.
If anyone feels lead, we need live-in help. NOW.
michelle
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Michelle Allemang
MichelleA
Joined: 13 Jul 2002
Posts: 11
Posted: Mon Jul 29, 2002 5:00 pm Post subject:
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Several "good" days in a row make life feel almost normal. She's not staying awake as long at night now when she does wake up. That's a relief. Spent yesterday afternoon at Grandma and Grandpa's house with cousins. In the late afternoon when it cooled off, Chloe and the rest of the kids played outside. It was so nice to be out of our house for the day. I didn't realize how boxed in we are. We've got to find ways to attain some normalcy.
Tomorrow we are off for our once a week chemo. trip. She looks pretty white. I hope she won't need blood. With each aspariginese shot she gets, there is an increased risk of reaction. She's had 2 of 20. They have already affected her ability to absorb protein and they make her sick. If anyone actually reads this, that is something to pray about.
The hunt is still on for a nanny. Any takers?
People ask how Chloe is doing. She has good days and bad and we take each one as they come. She's been through 8 weeks of chemotherapy, spinal taps, bone marrow tests, CT scans, shots, etc, etc.. We have 100 more weeks left to go if all goes according to schedule. If not, it will drag on longer.
"A horse is a vain hope for deliverance; despite all its great strenght it cannot save. But the eyes of the Lord are on those who fear him, on those whose hope is in his unfailing love, to deliver them from death and keep them alive in famine.
We wait in hope for the Lord; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name." Psalm 33:17-21
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Michelle Allemang
Kathaleen Hill
Joined: 25 May 2002
Posts: 15
Location: Kirksville
Posted: Mon Jul 29, 2002 10:20 pm Post subject: Yes Michelle, we are reading and praying!!!!
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Michelle, I just wanted to say how much we appreciate you writing about your time of caring, praying and loving Chloe. We do read the posts. I think there are many people who read who have never signed on. It has been my experience that in times of extreme illness, people really don't know for sure what to say. It is an educational process for you and thanks for sharing that with your church family. We usually only know that someone has a specific illness. We really don't understand what that means until we hear the detail of what it takes to live thru those hospital stays and Dr. Appts. I am sure this seems endless, but we believe in total healing for Chloe. We love you and continue to pray. Kathaleen
Molly Nickerson
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MichelleA
Joined: 13 Jul 2002
Posts: 11
Posted: Tue Jul 30, 2002 2:58 pm Post subject:
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Thank you, Kathaleen! Yes, I'm learning a lot. I know you've walked here. Thanks for understanding and mostly for praying!!
Bless you, Molly.
We are just back from the hospital again. Chloe's blood counts were low, as expected, but not so much that she needed blood. I'm thankful for that. And we made it home without puking in the car! I had them give her an addittional antinausea med.. She'scarfing down salad at the moment, her favorite. Unfortunately, she won't eat the cheese that has the protein that she needs. The Asparaginase shots she's getting prohibit protein production. She's not losing weight and that is a very good thing. I'm giving her lots of whole milk!
Next Tuesday, we check in the hospital again for 4 days for her 24 hour Methotrexate drip and subsequent rescue drug. She'll also have a spinal tap and bone marrow test along with a load of other drugs. She has done extremely well with this past dose of meds.. None of the previous side affects she experienced before. That's amazing. Thank you, Jesus.
Some trust in chariots, and some in horses, but we will remember the name of the Lord, our God!!!
michelle
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Michelle Allemang
amycatherine01
Joined: 23 May 2002
Posts: 15
Location: Kirksville
Posted: Tue Jul 30, 2002 10:20 pm Post subject:
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Hey Michelle,
Every since Cloe was first born, I always thought there was something special about her. As she got older I would always look at her and think wow she looks like a little princess. Still when I look at her, even in her pictures her dazling eyes and smile say princess. She is going to come out of this thing like a brave princess. She is a strong little girl. My prayers are with you.
Amy
MichelleA
Joined: 13 Jul 2002
Posts: 11
Posted: Thu Aug 01, 2002 11:43 am Post subject:
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It's been almost 2 months since Chloe's diagnosis. What a roller coaster ride. Ugh! What a battle emotionally, as well as spiritually. This week I seem to have leveled out. Last week as I was struggling with depression, God said, "Run (to Him), don't wallow (in my mess)." Oh yeah! Duh! I plea temporary insanity. Got my eyes off Jesus for a few days. That really IS insane! But, I'm up and running agian, right straight to Jesus. What a difference in perspective and hope! The view from His feet is great! I'm so thankful to serve such a faithful God. I know I can trust Him with every need.
We were a little cautious at first to say it, but we really are sensing a victory in the spirit. It doesn't mean the battle is over or that we don't need to pray anymore, but there is an assurance of victory in our hearts. "And this is the victory that overcomes the world, our faith." The future is still full of question marks, but we are "looking to Jesus the author and perfecter of our faith." I just have to do the "looking" (in the right direction) and He does the perfecting. What a deal!
Chloe is doing amazingly well. She's feeling good and is responding well to chemotherapy. The other kids are anxious to start school. We'll have 2 in high school this year (Bethany and Mary), Amy in 5th, Josiah in 3rd, and Benjamin in K4. The new baby is due the first part of Sept.. Five more weeks or so and I'll feel sooooo much better!
Thanks to all who pray and to everyone who has provided meals, cleaned the house, mowed the lawn, and been a friend!
michelle
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Michelle Allemang
MichelleA
Joined: 13 Jul 2002
Posts: 11
Posted: Thu Aug 01, 2002 9:11 pm Post subject:
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Thank you, Amy, for your sweet note! You're pretty special, too!
Keep praying,
michelle
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Michelle Allemang
angmm
Joined: 23 May 2002
Posts: 10
Location: Kirksville
Posted: Wed Aug 07, 2002 8:23 am Post subject:
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Hi family! You are probably staying at the hospital now, but I wanted to post this and let you know I'm thinking about you and praying for you, and miss you very much! I am glad Chloe is doing well, we won't stop praying either. You guys are awesome, Chloe really is a princess, and we serve an amazing God. I love you all, I'll call soon.
Love,
Angela
MichelleA
Joined: 13 Jul 2002
Posts: 11
Posted: Fri Aug 09, 2002 8:19 pm Post subject:
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Just back from another grueling round of chemo.. On Tuesday Chloe got 3 drugs injected into her spinal fluid, one shot in her leg, 3 IV chemo. drugs, 3 drugs to put her to sleep, 2 anti-nausea drugs, one oral chemo. pill and I'm probably forgetting a drug or two. Then that night she got started on her 24 hour IV drip chemo. and the next day on a massive dose of steroids. Whew! She is such a little trooper.
Tuesday late afternoon she spiked a fever. That's a major concern when one has depressed immune system defenses. They targetted the source of the problem very quickly, I'm grateful to report. It was a urinary tract infection. So, she started on yet more drugs for that. Thank you all for praying and please, please don't stop!
Trey stays with Chloe in her room at night in the hospital and sleeps on a fold out chair thing that is incredibly uncomfortable with two very large gaps between cushions. He has put up with that with relatively little complaint all this time. But with everything else, he didn't need to wake up stiff and in pain. Soooo, Mary and I smuggled a mattress from a chair in the waiting room into Chloe's room and "fixed" the bed. It made it a little more tollerable, almost comfortable.
Chloe was as tired as I've ever seen her this afternoon. She rested on my bed with me for a while, cuddling up and talking sweetly as she played with my face. What a precious little girl! She couldn't keep her eyes open passed 6:30. I have to wake her at 10:00 for more meds.. Hopefully, she'll go right back to sleep! Hopefully.
I can't think any more tonight, so I'm off to bed, too.
Blessings on you all!
michelle
_________________
Michelle Allemang
Trey
Joined: 04 Jun 2002
Posts: 19
Posted: Sun Aug 11, 2002 6:12 pm Post subject: New photos
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new family photos (mostly of Chloe) at http://home.swbell.net/allemang/
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Trey Allemang
Trey
Joined: 04 Jun 2002
Posts: 19
Posted: Mon Aug 26, 2002 11:11 am Post subject:
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Hello friends. Here's a quick update on Chloe.
She's doing well today. When people ask how she's doing it's difficult to describe; every day is different. She's been happy and cheerful for several days -- that's good. But she hasn't eaten much of anything for about 3 days -- That's not good for a kid on chemotherapy.
She will be 2 years old next week (September 4th). She's talking in complete sentences, and copies everything anyone says. She's a joy.
Tomorrow, I will take her to the hospital in Columbia for her last scheduled inpatient stay (where she stays overnight). She will be there Tuesday through Thursday (possibly Friday too). Our daughter Mary (age 14) is going with me for the day Tuesday to help take care of Chloe.
Wednesday, Paul Petry will come see us, and Thursday Harold Forbis (age 50 )is planning to come with our daughter Bethany (age 15).
My wife Michelle has gone on the previous trips, but she won't be able to go this week because she's in a lot of "discomfort" with the pregnancy. She is due any time (it's a boy). She will probably visit Wednesday if she's not in labor .
Here's news for those outside of Kirksville: Anna Olsen moved in with us two weeks ago! She is great! She works at the Traveler's Square full-time, but when she is at home she helps carry the load of caring for 6 children. Michelle can't be on her feet too much (which is terribly frustrating for the warrior woman). Anna came just in time.
Chloe has been hanging out with me in the office more, and my job is such that I can leave my desk when necessary and come back . Last week I spent a lot of the days caring for her and working late at night.
I work for a big international corporation, EDS, from home. The account I work for in Little Rock, Arkansas went overboard recently to raise money for Chloe. It was simply overwhelming: all the creativity and care they displayed. People I work with from there, and Dallas, Houston, and Mississippi took part. Many, if not most of the people who participated have never met me face to face. I work with a great bunch of people.
Chloe will begin the massive chemotherapy routine again tomorrow. Too many drugs to describe that make her feel awful, and potentially damaging to her organs and nervous system. Here's how I pray about this (stay with me, it takes a bit to describe).
The Bible in John 9 describes the account of Jesus healing a blind man. He spat on the ground, made some mud balls with his saliva and dirt, and applied it to the blind man's eyes. He told the guy to go wash it off. When the blind man did this, he regained his sight.
This was obviously a miracle, but I also see this as a picture of medicine. Jesus took something from the ground, anointed it, and applied to a person's body. What are drugs? They are elements which come from the earth.
So, we ask Jesus to anoint the drugs to bring life to Chloe, and not death. In childlike faith we ask that the drugs will kill off the leukemia without damaging her little body. If your heart stirs you, will you please pray this way too?
Your notes of encouragement and phone calls are one of the greatest gifts you can give us during this time. Sometimes we feel isolated since we have to keep Chloe away from crowds much of the time. But we're not discouraged. We serve a great God, and we have great friends.
_________________
Trey Allemang
Christa:)
Joined: 29 May 2002
Posts: 25
Location: Kirksville
Posted: Sun Sep 01, 2002 3:45 pm Post subject: a moment of prayer, an eternity of assurance
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Dear Allemang family,
I am in tears as I write this because I am thinking about what an amazing God we serve. Through strange circumstances, He has been speaking to me about how precious the processes of our lives are. You are all in the midst of an intense process, and I know that in the midst of trusting our God and keeping faith in Him there are also moments of great hurt, and it is into those moments I want to speak.
My home group was praying for Chloe recently, and I began to think about the struggles you've faced in this process but also about the testimony that lies on the other side of the process. As we prayed, I saw Chloe as a young woman many years from now walking in quiet and steady assurance of the care of her Lord with a deeper appreciation for life in Him than many of us will ever know. Her faith and trust in Him will have deep, deep roots, and she will be able to walk through other processes in her lifetime„processes which would destroy most of us„without being shaken. It will all come from the testimony of this time...but because of this testimony, there are greater testimonies on the other side.
It's worth the hurt. This isn't the story of her life; it's just the prologue, and if the promises over her life are so great now, what will they be in the pages to come?
Press on, family of God.
With love and in great faith,
Christa Beemer
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Jeremiah 29:13
Trey
Joined: 04 Jun 2002
Posts: 19
Posted: Tue Sep 03, 2002 9:46 pm Post subject: Chloe update
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Thank you Christa!
We are back from the hospital. Chloe again did great. She was there Tuesday thru Thursday night last week. The weekend was especially difficult. The prednisone (steroids) cause extreme emotional difficulties, and this round was the worst I've seen. It also affects her sleep and appetite. During these times, it helps to remember (and it's easy to remember) that our sweet little girl is still in there behind the yelling and screaming. Monday, she began to return to her wonderful, sweet self.
Today (Tuesday), Jerry Burbee made the trek with Chloe and I to Columbia. Chloe has never spent time with him, but she instantly felt comfortable. He entertained her and built a friendship with her that will last.
We left at 8 a.m., and returned at 6 p.m. Chloe's catheder is having problems drawing blood. This caused a 2 hour delay.
Chloe's heart rate was steadily in the 160s today, which is very high for her. Our oncologist sent us to a pediatric cardiologist to check her out. The conclusion: her heart is enlarged from chronic anemia. Her heart has to work harder to pump blood with lower hemoglobin. They're not sure what to do about it yet; perhaps take her off one of the chemo drugs. This is definitely a matter for prayer.
There is no new baby yet. Our doctor said they will probably induce by Friday.
Thanks for reading.
_________________
Trey Allemang
Trey
Joined: 04 Jun 2002
Posts: 19
Posted: Tue Sep 17, 2002 12:02 am Post subject: Family update
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Daniel Ryan Allemang was born on September 6th, and he's doing great.
Michelle had an appendectomy this evening. She had been in pain several days, and thought it was related to the c-section (10 days ago).
The surgery went well, and she will probably be in the hospital a few days. She's in a lot of pain. The appendix had ruptured, but her tissue "walled around" the appendix, preventing the spread of bad stuff throughout her abdomen.
Chloe has chemo tomorrow in Columbia. Thanks for continuing to pray with us. Times have been tough, but God is greater than all this.
Our church family continues to shine.
I'm sorry to be so brief and business-like, but not too sorry. Love from our family...
_________________
Trey Allemang
anna olsen
Joined: 25 May 2002
Posts: 2
Posted: Wed Sep 18, 2002 12:49 am Post subject:
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Well, it has been awhile since anyone has posted on how Chloe (and in general the Allemang family) are getting along. For those of you who don't know, I have lived here for a little over a month now, and I can't begin to describe to you what is going on in this wonderful family. To begin with, God really did something in my heart and their hearts, and I am really a part of their family. It is wonderful. I love them all very deeply. I am learning more and more about the goodness of God and how our contentment and commitment does not hinge on the circumstances that are surrounding our lives. I have watched as each new trial in their lives surfaces, (and there have been quite a few as of late) them bless God over and over again for His faithfulness. It's not like their just barely hanging on and when they're at home alone, everything just kind of falls apart. The peace and goodness of God reign in this house more than in any situation I've seen to date. His strength really REALLY is made perfect in our weakness. So many people have come around them to help them and offer support, and there is so much sacrifice going on to make sure that they're taken care of, it's amazing. The best part of it all is that it's not a burden, because they are a genuine part of our (the church's) family, and so it's nothing to help them out. It's really such a joy to so many people to help them when their circumstances seem like they could just swallow them up. As I have watched them live out daily life, I can only cry out that God will do in my heart what He has done in theirs so that I may serve Him and love Him and know Him as they do everyday.
Chloe is now in the second phase of her treatment, and no longer has to go down to Columbia to do in patient treatments every third week, but still has to go at least once a week for other chemo drugs. She still has to do a round of steroids every three weeks, and the effects of those seem to be a little harder the past couple times she had to do it. She is such and amazing little girl. She's really smart and FUNNY! (imagine that) She's very affectionate and doesn't really know a lot of the time that she's "supposed" to act sick. She brings so much life into that home.
Michelle had baby Daniel Ryan (the judges are still out as to whether we're calling him "Daniel" or "Ryan") on Friday the 6th. He was 8.8, and has a lot of dark hair. He's really really sweet. She had a C-section, and it seemed to be taking a long time to heal, and then on Monday the 16th, they found out that the reason that she was in so much pain was that her appendix had ruptured. God totally intervened though, and a wall of tissue formed around her appendix and held in all that infection, so that it didn't get spread through her body. Isn't that incredible. See what I mean that in the middle of terrible circumstances, the goodness of God is made evident over and over and over again. Anyway, she's in the hospital now, recovering from THAT surgery. Please pray that she heals very quickly and is feeling better fast, even if just for her own emotional state. We all know how draining it is to feel really sick for so long that it seems like you'll never get better. Also pray for Trey. With Michelle out, he's carrying quite a load and on not a lot of sleep. Please pray that the steroids Chloe is on this week don't make her freak out, but that they'll just make her really really hungry instead!
I love you all and just ask that you continue to pray for the grace of God to be poured out on ALL of the Allemangs (the kids are doing so awesome, even though this wears on them too).
If you read this whole post, you're a trooper.
God bless you all - Anna
After I posted this, I somehow saw that there were more posts than I thought, so some of the info is duplicated, but that's ok, you probably needed to hear it twice anyway
anna olsen
Joined: 25 May 2002
Posts: 2
Posted: Sun Sep 22, 2002 11:11 pm Post subject:
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Just thought all of you (who are still checking the forum) would like to know that Michelle came home from the hospital on Friday and is doing so much better! The docotors tell her it will be about 6 weeks before she'll really be able to lift anything, or be completely back in the swing of things, but everyday she looks like she feels better, although at this point she really has to keep up with her meds, or she's in a lot of pain. Please keep praying. Chloe's little legs and arms were hurting her today because of the steroids she was on last week. She's so sweet! those steroids help her (I'm sure somehow), but they really wreak havok on her too. Plus, they taste disgusting! She's such a little trooper and takes them though. Please keep praying for grace and for REST for the entire family.
God bless you all!
Anna
Molly Nickerson
Joined: 30 May 2002
Posts: 89
Location: Kirksville
Posted: Wed Oct 02, 2002 11:53 am Post subject: Praise god for the good report
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Just a note to thank you fro the updates, and to let youknow how much we love you all, are praying and thinking of you daily. May God strenthen you heart, mind, and mind today!
love, Molly for the Nickersons
Trey
Joined: 04 Jun 2002
Posts: 19
Posted: Sun Oct 06, 2002 3:53 pm Post subject: update
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Chloe is fighting along.
This week we met with our oncologist. He recommended we stop the medication which is damaging her heart. He also gave us his recommendation regarding cranial radiation. According to the treatment protocol, she’s supposed to get radiation in a few weeks. Well, he recommended postponing it a year, or not doing it altogether. This was the news we wanted to hear, as radiation can have devastating effects on a child as young as Chloe.
The medical team is also very concerned about Chloe’s appetite. It’s very difficult to get her to eat anything….and I do mean anything. People have suggested ice cream, etc., but she’s not interested. Our church made that a matter of prayer last night.
Chloe is also starting to grow a little hair again. We don’t know if another phase of the chemo will make it all fall out again. We’ll see.
Michelle is doing better. Her strength is still very low, but she’s building up. Bethany and Mary are doing great. Amy is doing fine, but she tends to silently carry a lot of the stress of the situation. Josiah is still himself. Ben is loving K4, and the baby (Daniel Ryan) is very sweet.
Thanks for continuing in the fight with us.
_________________
Trey Allemang
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Trey
Joined: 04 Jun 2002
Posts: 19
Posted: Tue Oct 29, 2002 10:45 am Post subject: Chloe is home
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Last Tuesday (Oct. 22), I took Chloe in for her weekly chemo visit. After we returned home, she took a four-hour nap, and woke up with a 101.3 fever. Our oncology nurse had us take her to the hospital right away. She stayed in the hosptial in Columbia until yesterday (6 nights). She was given lots of antibiotics, and many tests were performed on her blood and stools. She probably had a virus, and it just took a long time to kick it. As usual, she was a real trooper and constantly amazed the doctors and nurses with her sweet attitude through the entire ordeal.
The first night we were there, the nurse went out to get Chloe a bottle of milk. When she handed it to Chloe, Chloe immediately could feel it was cold. She handed it back to the nurse and said "warm it up". The nurse laughed and obeyed the princess's command.
Also the first night: Bethany (our wonderful almost 16 year old) was with Chloe and I. When the resident physicians were doing the admission check in, they asked us "is it just the three of you?". (They thought Bethany was the mom.) This happenned with Mary (age 14) once too. Who could blame the inquirers, as I look so young?
Chloe's fever broke Sunday. It went up, then came down on its own.
I think Michelle will also update about this trip.
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Trey Allemang
MichelleA
Joined: 13 Jul 2002
Posts: 11
Posted: Wed Oct 30, 2002 9:53 pm Post subject:
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Chloe is home from her longest hospital stay yet. I pray it remains the longest. Trey is the headline guy, but if it's details you want, keep reading.
On the Tuesdays that I don't get to go with Trey and Chloe for her weekly chemotherapy, I always fight back tears as I send them out the door early in the morning. It's hard to let her go without mommy. So, it was doubly difficult when she spiked a fever last Tuesday evening and I had to send her back to the hospital for the second time that day without me. Over the next 5 days, I made the 200 mile round trip several times and was at the hospital all but one of those days.
On Saturday when I returned home, the boys were begging to go to Columbia. When I asked Benjamin (4) why he wanted to go, he said, "Because I always love her and I want to see her." Well, I lost it right there! We decided we would all go down the next morning.
Chloe hadn't felt well, but Trey said that as soon as we all walked in Sunday morning, she perked up. Leland said that Trey perked up too. It is very draining for him to be attending her literally 24 hours a day for days on end. A two-year old on chemo can be just a tad moody. Even so, she is an absolute doll most of the time.
The other 6 children and I spent the night in a room at the Ronald McDonald House Saturday. Yes, we all piled into just ONE room and had a slumber party! We were hopeful that Chloe could go home the next day. She was indeed released and we celebrated with lunch at the Olive Garden. A treat indeed since we don't eat out all together very often.
Our day at the hospital, the little slumber party and Olive Garden lunch were meager attempts to bring some fun into our very sober lives. You really can't imagine the extreme stress a child fighting leukemia with intense chemotherapy. Relatively minor decisions become a matter of life or death. Nothing remains flip or whimsical. Everything has been way too serious for so long. I am attempting to lighten the atmosphere in our home and bring back some joy. It has been a heavy 5 months. Really seems like 5 years. Daily chores and regular routines feel so much more burdensome than they used to. Even ten-year-old Amy said tonight, "I don't know what I could have been busy with or worried about before Chloe got sick." Life seemed so much easier and care-free just 6 months ago. Enjoying life and having a little fun is a concentrated effort these days, but we are doing our best.
One of my biggest concerns through this long treatment process is for our other children. Chloe is very consuming. So much of our physical and mental energy is spent caring for her, feeding her (or trying to), medicating her, keeping her healthy, etc.. With a newborn in the mix now as well, we constantly hop from child to child. Bethany (15 1/2) carries a load that most girls her age don't touch until they are married with children. She does so with grace, joy and a completely selfless attitude. She sets a wonderful example for her siblings. Mary (14) is following closely in her steps. Amy (10) does her best when she remembers. The added pressure has been hard on the girls, forcing them to grow up just a little faster than planned. Even Josiah (age eight) has felt the pain of his little sister being made fun of for being bald. He was diagnosed with ADHD this summer and we are still in the process of learning how to effectively communicate with him. Benjamin (4) is fairly happy-go-lucky but is pretty perceptive and prays the sweetest prayers for his little sister. In the midst of so much sadness, it has been a challenge to remember to enjoy, not just take care of, our new little Daniel Ryan (7 weeks). Each of them are so unique and precious. I want to cherish each one for the short time they are young.
Tomorrow we will take Chloe for her major chemo that she receives every 3 weeks. She'll also get a spinal tap and intrathecal chemo (shot into her spinal fluid). Please pray and agree with us for continued remission (forever) and protection against negative side-effects from treatment. Command that the drugs do their job and the toxins then be flushed from her system with no build up. I believe with our prayers, her discomfort can be greatly reduced. Please, please continue to stand with us. I understand more than ever what it means to "bear one another's burdens". We need you to bear this with us. It's much too heavy for us alone.
Much thanks to our friends who have come along side us and supported us in many ways. We wouldn't have made it through these months without you all.
Thanks for letting me pour out my heart.
michelle
_________________
Michelle Allemang
MichelleA
Joined: 13 Jul 2002
Posts: 11
Posted: Thu Oct 31, 2002 5:04 pm Post subject:
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We've heard from some of you that read our updates on Chloe but don't have access to this forum. It would GREATLY encourage us if you would drop us a quick note via e-mail.
Trey's e-mail address: allemang@swbell.net
Michelle's: allemich@swbell.net
Thank you,
michelle
_________________
Michelle Allemang
MichelleA
Joined: 13 Jul 2002
Posts: 11
Posted: Fri Nov 01, 2002 7:12 pm Post subject:
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----- Original Message -----
From: Gabrielle Squires
To: allemich@swbell.net
Sent: Friday, November 01, 2002 3:33 PM
Subject: chloe
Hi, Michelle.
I don't know if you remember me, but I used to live with the Kreighbaums when I was in college. When you guys were still in Topeka we came to visit one time. Since then, I graduated from college and married Scott Squires.
Anyway, I faithfully check the forum several times a week to see any updates on Chloe and to see how you all are holding up. I pray for you all when I remember to and you guys are very much on my heart. I was leading the Children's Church on Friday night of the Leadership Conference and had the privilege of seeing your two older boys. They were quite worn out but well-behaved and sweet.
I really have no idea how hard all this has been for you, but I have the utmost faith that God's hand is at work and His will is being done.
Keep in mind that right now, not just when this is all over, but now your family is an amazing witness and testimony.
Thank you for serving Him and being faithful.
Gabrielle
Gabi, (do you still go by that name?)
Yes, of course, I remember you.
Thank you so very much for your note and mostly for your prayers! It means SO much to us to know that others are standing with us in this battle. You have no idea how much it means to us. It is literally a daily battle, emotionally, spiritually, and even physically because we get so tired. Chloe usually doesn't sleep through the night. That is especially true when she's on her high dose steroids. Of course, baby Daniel doesn't sleep all night either. Please keep our other children in prayer as well as Chloe.
Thank you so much!!
Blessings on you and Scott!
michelle
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Michelle Allemang
Trey
Joined: 04 Jun 2002
Posts: 19
Posted: Fri Nov 08, 2002 12:50 am Post subject: steroids and grace
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It’s Thursday night, and Chloe’s last dose of steroids (prednisone) for this 5-day round was 48 hours ago. Michelle and I mention steroids so much because the side effects are the hardest on Chloe and the entire family. One of the parents of a child in leukemia treatment describes it this way:
“I always dread the steroid pulses. For my son the side effects start fast (a few hours after the first dose) and linger a few days after he stops taking the medicine. He gets HUNGRY and grouchy and little things drive him over the brink.”
This is also true for Chloe, except thus far it wipes out her appetite. She is too young to take a pill, so we have to give it to her ground up in some kind of syrup to make it somewhat tolerable to swallow. Chocolate syrup works best, but the prednisone is almost indescribably nasty to the taste. Chloe vomited it up at least 7 or 8 times over this five-day period. When that happens, we have to start over and give it to her again. She is so tough about it though. Usually we have to offer her some kind of reward to take the medicine. If you’re thinking, “you should just make her obey and take it”, you have no clue about what we’re dealing with. This little two-year old has to concentrate to not throw up her medicine. Or, more accurately, we have to distract her mind from the natural urge to throw up.
Usually the routine goes something like this:
“Chloe, it’s time to take your chocolate medicine”.
“Don’t want it”
“I know, but you have to take it”
(louder) “Don’t want it!”
“I’m sorry sweetie, but you have to take it.”
(walking away, turning head away, crying) Don’t want it, no!
“Chloe, do you want to go for a drive?”
Chloe nods
“Okay, you have to take your medicine and don’t throw up, and then we’ll go.”
Then she takes it through a syringe. Sometimes, after she swallows, a look comes over her face, and you know it’s coming back out and you have about 15 to 20 seconds to grab a bowl. After she throws up, she calmly says “I throw up”. Then we start over.
We try to time some of our errands around twice-or-three-times-daily episode, so we’re not just going for a drive.
After the five days of taking steroids, Chloe deals with the main side effect of withdrawal: strong pain in her legs. It hurts her to walk. This time the pain has lasted for two days. Sometimes after a nap when we put her down to walk, she’ll take a few steps gingerly and then burst out in tears. Last night, at about 1 in morning she woke up crying, “My legs hurt, legs hurt”. I rocked her for about 45 minutes and she was able to go back to sleep. She woke up again about 4:30 in pain. I got up with her, but Michelle couldn't stand it, and she came and rocked her (she then nursed the baby before going back to bed). Ibuprofen helps with the pain, but we have to make sure to give it to her many hours apart, so as not to mask a fever (since the chemo drugs suppress the immune system, if she has an infection, you WANT to know about it right away, and Ibuprofen and Tylenol reduce fever).
Today she was outside with Amy, Josiah and Ben. I went out to see them, and when I looked at her face, I could see the suffering in her eyes and in the gray tint in her countenance. She looked tired and hurting, but also to be genuinely enjoying being with the other children outside. It broke my heart. But also in the moment there was a tender thankfulness for her precious life.
Yesterday at 6:30 a.m. at prayer at church, my brother Leland came over to me and prayed that I would be able to rejoice in my suffering and be able to lead my family in that. It seems like God is answering his prayer. It’s one thing to endure; it’s another thing to really enjoy the grace of God in the midst of pain. The dear Corrie Ten Boom said, “There is no pit so deep that God is not deeper still”. She knew that first-hand, and now we are beginning to understand what she meant. Thank you, Jesus for the pain that You endured, and that You are with us in our pain.
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Trey Allemang
Posted: Sun Nov 24, 2002 12:10 am Post subject: Chloe update..Saturday Nov. 23
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Chloe just finished her latest 5 day steroid round. She did much better this time -- no throwing up! Also, her emotions were not nearly as extreme as has been the norm. She's been very tired. She spends a lot of time with me during the day in the office while I work. Her movie of choice for the past few weeks has been "Pollyanna" (a real classic, honestly!).
We had two poignant events this week which struck some serious emtional nerves. One was a play at Truman State, an excellent adaptation of "A Christmas Carol". There's a scene (Christmas future) when Bob Cratchet and his family mourn the losss of Tiny Tim. The actors pulled it off, and Michelle and I along with our older three daughters had to fight to maintain our composure!
Then today we went as a family to Ellery White's funeral at Heartland. Ellery was a twin baby girl who was born at 28 weeks, and only survived on this earth a few hours.
The emotions of these events bring the reality of Chloe's situation to the foreground, and through many tears we've had to commend her again to His keeping. This is a short paragraph, but there's a lot to it, believe me.
Earlier this week when Chloe wasn't feeling well, Chloe and I were returning home after taking our oldest 5 kids to school. The song "Lord you are good and your mercy endures forever" was on the CD player. At the part of the song they sing "you are good, all the time, all the time, you are good", I saw Chloe in the rearview mirror singing the words. She was feeling terrible-- her eyes were puffy and her cheeks were swollen -- I wish you all could have seen her worship through the pain.
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Trey Allemang
Sunday, October 06, 2002 at 03:57 PM (CDT)
Chloe is fighting along.
This week we met with our oncologist. He recommended we stop the medication which is damaging her heart. He also gave us his recommendation regarding cranial radiation. According to the treatment protocol, she’s supposed to get radiation in a few weeks. Well, he recommended postponing it a year, or not doing it altogether. This was the news we wanted to hear, as radiation can have devastating effects on a child as young as Chloe.
The medical team is also very concerned about Chloe’s appetite. It’s very difficult to get her to eat anything….and I do mean anything. People have suggested ice cream, etc., but she’s not interested. Our church made that a matter of prayer last night.
Chloe is also starting to grow a little hair again. We don’t know if another phase of the chemo will make it all fall out again. We’ll see.
Michelle is doing better. Her strength is still very low, but she’s building up. Bethany and Mary are doing great. Amy is doing fine, but she tends to silently carry a lot of the stress of the situation. Josiah is still himself. Ben is loving K4, and the baby (Daniel Ryan) is very sweet.
Thanks for continuing in the fight with us.
Thursday, July 11, 2002 at 01:10 PM (CDT)
Hospital Schedule:
July 16-19
August 6-9
August 27-30
Thursday, July 11, 2002 at 01:03 PM (CDT)
This is a combination of several entries...
Posted: Thu Jun 13, 2002 6:30 pm Post subject: Chloe Allemang
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Trey here. Kathy suggested I post this on the forum so you all know what's going on with Chloe.
Here's an update on Chloe (our #6 child who is 21 months old).
She has been diagnosed with leukemia (ALL, T-cell -- for the medically
astute).
She's in the first stage of chemotherapy. So far, the results have been
dramatic.
Her temples and eyes were very swollen. Her left eye was bulging out to such an extent that she could not close her eye. She looks normal now, praise God!
We are believing God for complete healing and restoration. We are also using medicine.
She was in the hospital Wed. thru Sat. last week. We went back to the doctor in Columbia Monday, and she had to have blood.
The chemotherapy kills everything in it's path (white blood cells, red blood
cells, leukemia (blast) cells).
As you know, the white cells are the body's defense against infection. The
chemo kills these cells, which increases the risk of infection. If Chloe's temperature ever goes above 101.5, we have to take her to the hospital in Columbia right away to treat the infection. It's an automatic 2 day inpatient stay. So please pray with us that these type of infections will be minimized.
On a natural level, we are taking many precautions to prevent infection:
* hand washing with antibacterial soap before touching her,
* lysol everywhere,
* no more Helen (as in Keller, wandering around the table eating off
everyone else's plate).
We are making frequent trips (twice weekly) to Columbia, MO, which is about 100 miles south of Kirksville. On Thursday, June 27, she is scheduled for a 4 day hospital stay for more testing and treatment.
Our friends at CLF haven proven their valor and friendship again. When we
returned from the hospital Saturday, the lawn was mowed, the house was
cleaned and sanitized, food in the fridge, etc. Lori Forbis has been arranging meals and other stuff for us. We have truly been overwhelmed.
We are still very tired. Michelle is 6 1/2 months pregnant....selah....
Chloe is obviously too young to understand what's going on. But she is doing well. Today was a difficult day (lots of fussing and crying). But, to put things in perspective, I read today about a pastor and his 17 year old
daughter in Indonesia who were killed in a bus bombing performed by Muslim radicals against Chrisians. (www.persecution.net) Chloe is going to
overcome this illness. Then she can grow up to love Jesus -- and become a martyr, if God honors her so.
If you are live outside of Kirksville, you might want to get the tape of the
prayer meeting from June 8. Tom let Michelle and I share for a good while
about what's up, and how good God and His people have been.
Our times of weeping during Chloe's hospitalization came multiple times. But there were two common threads. One was weeping with Chloe over her pain when we could not comfort her. Every parent in that hospital probably did that. But the other times we wept were when we realized what wonderful friends we have. Kris and Martha showing up the first night...Tom Bedford coming at 1 a.m. to pray with me...He and Andrea just being with us when we got the bad news...Duc taking time from his day to be with us...Harold and Lori spending much time with us...my mother and father....Paul Petry taking his day off to be with us...Steve coming at 10 p.m. with faith and the Word of the Lord...on the list goes...The hospital staff commented on how amazing our "support group" was....amazing indeed.
We continue to fight the good fight, and are glad you are fighting with us.
We will keep you updated.
Thank you for your notes of encouragement. They mean a great deal to us.
Trey
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update: 6/17. Monday night:
I just got back from Columbia with Chloe and my friend Harold. He went with me last Thursday and today to allow Michelle to remain at home. We left home just before 6 a.m. and returned at 4:30 p.m. Today, they checked her blood and gave her hemoglobin for the second Monday in a row. The blood transfusion takes about 3 hours, and the trip is just under 100 miles, one way.
Things are going well. Chloe has been doing great. She's starting to show signs of taking prednisone. Her gut is enlarged and her cheeks are swelling. But she has had no nausea, and has actually gained a little weight. Thursday, they will do another spinal tap and chemo.
People from church have been bringing us dinner since we returned a week ago Saturday. That has helped a great deal. We're still pretty tired, but the reality of what we're facing is setting in now. I'm starting to work again. God is good. I've gotten notes from people around the country I've never heard of to tell me they're praying.
Tuesday: Ben (our 4 year old) got sick today, so we had to isolate him from Chloe. Her white blood count is officially at the "at risk" point for infection, so we can't have Ben coughing around her. Angela Millican got sick Sunday, and we had to get rid of her for a few days. I call this our "one strike and your out" policy.
Next week on Wednesday, she's scheduled for a 2 or 3 day hospital stay for more testing and a new round of chemo.
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Trey Allemang
Posted: Mon Jun 24, 2002 2:34 pm Post subject: Chloe update 6/24/2002
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Michelle wrote this today:
Dear friends,
This is the latest on Chloe. Deepest thanks to all who are praying fervently for her! Also, to our church family that has so strengthened us with your love and support, thank you! Your friendship means everything to us!
She is responding well to the Chemotherapy so far. She hasn't been sick, but did lose most of her hair this week. The steroids have her puffed up and looking chubby. She is eating and drinking really well as the steroids also give her quite an appetite. She has gotten used to her PIC line (permanent catheter in her arm) and doesn't fuss too much now each day when we have to flush it.
Last Monday (June 17) she had her second red cell transfusion. At that time, her platelet count was very low (19,000) so they were planning to transfuse platelets on Thursday when we took her back. But when they did the lab work on Thursday, her platelet count was at 136,000!!! So, no transfusion was needed. Her red and white counts were also up. One nurse told me that probably means she is in remission. How I wish that were the end of it. But the treatment calls for two more years of chemo.
This week we will check her into the hospital in Columbia on Weds. morning and be there 3 - 4 days. Wednesday will be a long day of tests, new treatments, and procedures. Please especially pray for a sense of peace and security over her this week, binding fear and insecurity. We welcome visitors during those days. It was such a blessing to us before to have a steady stream of friends supporting us there. You can call us on our cell phone: 349-0537
As you continue to pray with us against the leukemia, please also agree with us against negative long-term side affects from all the brutal drugs on her little body (brain, liver, kidneys, lungs, heart, ovaries, etc.). The Name of Jesus has authority over these drugs! I have seen before my eyes a man so stoned he couldn't tell us his name until I rebuked the effects of the drugs in the Name of Jesus. Then, in his right mind, Ray told us his name, heard the Gospel, gave his life to Jesus, and gave us directions to take him home. JESUS is the Name above every name!
Times like these are an incredible opportunity to get to know God more. I'm thankful for that. It's an opportunity to find joy and gratitude in small things that might otherwise be taken for granted. What an opportunity we have in these days to "taste and see that the Lord is good!"
Here are the hospital's before and after pictures of Chloe.
Before:
After (after 4 days of treatment):
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Posted: Wed Jun 26, 2002 9:47 pm Post subject: in Columbia
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Hi from the hospital. It's 9:30 p.m., and Michelle just got Chloe to bed. It's been a good day. Harold, Chloe, Mary and I left KV at 7 this morning.
Chloe's blood work looked great. All of her counts were almost normal.
The bone marrow test showed specules (tiny bone fragments), which is great. That means the cancer is in remission, praise Jesus! They put her asleep with a sedative when they do this procedure. When she woke up, she spoke in slow motion. It was really funny. She wanted her shoe off, so she said "sssssss---shoooooooooooooo". Then, sssssssssssssock.
She couldn't eat for 8 hours before the procedure (the bone marrow test and spinal tap), so she was getting hungry just before. If you didn't know she was crying for macaroni (omi), you would have thought she was crying for mommy. But I knew, cause I'm smart.
Anyway, after she woke up, she ate all the macaroni she wanted.
Life in the hospital is pretty much about keeping Chloe from pulling out her IV. If you think that's easy, come give it a try. More to come sometime. I'm going to walk Michelle out to the car. She's staying at the Ronald McDonald house, which is just a couple of blocks from the hospital. I'm staying with Chloe. I'm in a small room room with a computer. It wouldn't let me use the Internet, but I hacked my way into it (shh, don't tell).
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Trey Allemang
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It's Tuesday July 2nd. We returned Saturday at 5:30 pm after four days in the hospital in Columbia.
Chloe's bone marrow test showed some leukemia cells, but they appeared to the pathologist to be weak and dying. After the testing, she had a 24 hour infusion of methotrexate(sp?). This is a drug which kills leukemia cells by depriving them of folic acid. When the cells divide, they just die. Then, she was given a "rescue drug" to keep her good cells from dying. She slept all night every night in the hospital.
Her swelling has gone down substantially now that she's off prednisone. Her main side effect of the chemo has been itching all over. The potential side effects of all the drugs can be upsetting just to read about (brain damage, heart damage, kidney damage, weak bones, etc.). But God is greater than all this. We are praying and believing that all the leukemia will die, and there will be no relapse. Michelle frequently quotes Jesus' words to Jairus: "Luke 8:50 "Don't be afraid; keep believing, and she will be healed."
Chloe is simply a very sweet girl. She's just plain fun to be around (and she knows it!).
One of the doctors commented again last week about how astounding it is that we have so many friends. This is based upon the many different people who have come to spend time with us.
The power of friendship is still at work in Kirksville. Harold and Lori have been awesome coordinating help. The meals have helped so much.
We're going back to Columbia tomorrow for more testing. Also, Michelle is going to see an OB (baby doctor) there in case she has to deliver in Columbia. Michelle is very tough, but she is feeling *very* pregnant. The baby is due August 29, but could come early.
The other children are also doing well. During the hospital stay, they were all able to come see us at different times. One of our light moments came when some of us were in the hospital room. Michelle asked "where are the boys?". As the word "boys" passed through her lips, the boys zoomed by in the hall with Josiah pushing Ben very fast on a tractor wagon thing.
Perspective is important. One night when I was starting to complain in my heart about having to sleep again on the hospital fold-out chair, I walked by the room of a little girl who lives at the hospital. She was crying for help with no one to help her. Michelle told the nurses she needed help. The nurses there are raising her. There countless children like this little girl all around us who need our touch if we are not consumed with our own trite problems.
I'm sure glad we can trust God. His grace *really* is sufficient.
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Trey Allemang
Thursday, July 11, 2002 at 12:45 PM (CDT)
We'll start doing journal entries for her today. Previous entries can be found at the links below
Click here to go back to the main page.
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