I just found out it is World Trisomy 21 (3/21) Down Syndrome Day! I am so glad that everyone is so accepting of Ammon and others who have Down Syndrome. A few years before I was born and earlier, doctors convinced parents their children should be institutionalized. Kids with Down Syndrome were basically good for nothing. I can't imagine that. I love the documentary about John. His parents were told to give him up and after a week they felt so bad and they knew they wanted to raise him and give him a chance. They went to the institution, brought him home, and treated him just like their other children and loved him. Although he couldn't do the same things as everyone else, he brought happiness and joy to their home. I know I have learned so much having a child with Down Syndrome. I enjoy meeting and interacting with the other kids we meet through the Down Syndrome Foundation. They are so cute and happy. They are so pure and innocent, love can just radiate through them. Ammon has cerebral palsy and epilepsy (and now Leukemia) as well, so he can't do as much as those children, but he emits a lot of love. Everyone wants to be loved and be accepted for who they are and those with disabilities are no different. We are grateful to have Ammon in our family and grateful to all those who love him as well. We appreciate everyone who says hi to Ammon, thinks about him, prayers for him, etc., even if you don't get a response. We can tell he appreciates it. Ammon loves the attention.
Well I hope you can smile today like I have. This beautiful spring day has given me a lot of hope that things are getting better. We left the hospital on Thursday night and it was not cold outside. I couldn't believe it. I hadn't been outside all day, so I had no clue it was nice. Then it snowed over the weekend, so we are trying to patiently wait for the warm weather to come back. Ammon is doing much better. It was kind of a stressful weekend, his port wouldn't draw blood back, so the nurse had to come out two times. Brynn was coughing all over and Ammon's counts were still low, so I was trying to keep them apart. Then I think the lack of sleep and everything hit me all at once, so I was worn out, done. Monday at 4:55 we found out that Ammon's blood counts had gone back up, so he is doing great. We get another few weeks off of chemo, they aren't going to have us make up for what we didn't get last week. Hooray. We are almost on to the Maintenance phase, meaning once a month treatments for the next year. So the worst should be over!
Wednesday, March 21, 2012
Wednesday, March 14, 2012
Ammons condition
Ammon has been a trooper, once again. After one night in the PICU, his vitals were stable enough to move to the ICS unit. He had been pretty calm on Monday, until late afternoon his crying began. It got worse and worse throughout the night and they were concerned about his oxygen level on the rise. Once we got his pain under control and calmed down, about 3 am, he was stable again. He was having servere abdominal pain and on Tuesday I took him to get an ultrasound and x-rays. The only thing they saw abnormal was tons of gas. We tried mylocon drops, heat packs, massage, and pumping his legs, but nothing seemed to be helping. He had a pretty good bowel movement that night and I was waiting for him to relax and fall asleep, like that was a relief, but no such luck. He did calm down for a few hours to sleep. Then this morning at 5:30 am, I could tell he was trying again and we soon had a diaper explosion. I quickly hit the call button for nurse back up. That's one benefit of being in the hospital, immediate help with changing diapers. After we scrubbed him down, poor Ammon, he went right to sleep. You could tell that it seriously wore him out. After sleeping in he woke up without crying. That's when I knew we had turned the corner on this particular battle. It's been a painful few days. He met the criteria today of not having a fever for 48 hours, however his white blood cell is still next to nothing, but he did get a hematacrit(red blood cell) transfusion. That might help with the overall function of his oxygen demands and healing. Tomorrow we will see if his counts improve and talk about possibly going home on Friday!
Monday, March 12, 2012
Where's the snow?
Brynn loves making snowmen( so do I). Unfortunately the snow just has not been sticking at our house, so brynn keeps asking when are we going to play in the snow. Well, i'm not too upset that we've had a mild winter, it's made it a lot easier to take ammon to and from his appointments. However, two weeks ago there was some snow on the ground. Brynn and I planned to make a snowman after church. By the time we got home, it had melted and she was almost in tears. Last week we had a blizzard over night and so the next day when the sun came out, I changed Brynn into her snow clothes right after breakfast. Already a lot of the snow had begun to melt, so this was about the best we could do. (i'll post a picture when we get home, just imagine a very small skinny snowman with gumdrop eyes) After about 10 minutes, we had our fill of trying to make something out of very little snow, in sunny but windy conditions,we were back inside. It very anticlimactic, but Brynn was happy. We made more paper snowflakes and had our hot chocolate.
Ammon almost survived the week. He threw up a few days at the beginning of the week and then seemed to be doing pretty well. He was
sleeping a lot, but yesterday we were dancing to Dynamite. Well throughout the night he started crying pretty hard and his temperature started to go up and down. Then around 4 or 5 am he started breathing heavy, but finally calmed down and went to sleep. I stayed next to him because i was not going to move a muscle and risk him waking again. After a few hours I noticed he was burning up and knew we needed to take him in. We are in the PICU tonight in an isolation room because he is neutropenic. One of the chemos he was taking this week is known for causing fevers and blood counts to fall, so maybe it was just a matter of time. Right now he is peacefully resting after the trauma for the day. Hopefully he does not have a virus and we just have to wait on his blood counts to go back up. I'm really hoping for a short stay.
Ammon almost survived the week. He threw up a few days at the beginning of the week and then seemed to be doing pretty well. He was
sleeping a lot, but yesterday we were dancing to Dynamite. Well throughout the night he started crying pretty hard and his temperature started to go up and down. Then around 4 or 5 am he started breathing heavy, but finally calmed down and went to sleep. I stayed next to him because i was not going to move a muscle and risk him waking again. After a few hours I noticed he was burning up and knew we needed to take him in. We are in the PICU tonight in an isolation room because he is neutropenic. One of the chemos he was taking this week is known for causing fevers and blood counts to fall, so maybe it was just a matter of time. Right now he is peacefully resting after the trauma for the day. Hopefully he does not have a virus and we just have to wait on his blood counts to go back up. I'm really hoping for a short stay.
Burning Bright...
Despite Ammon's illness setback referred to above, we are getting close to being done with this initial intensive 6-month treatment phase. We are close, and it's caused me to think quite extensively on what Ammon has been through and experienced during this first phase. Just a few thoughts.
Cancer and pain are two companions that are never far apart. They can’t do much without each other, in fact when they are separate they are virtually powerless. For many of us, pain is usually locked out in the harsh and freezing torrents and no matter how hard he pounds on our door we are not foolish or sympathetic enough to willingly invite him in and enjoy our company. Unfortunately, his companion, cancer, has an extraordinary key, perhaps more aptly described as a skeleton key. As a silent thief in the night, he uses this key on a seemingly random basis, unlocking the locks and bolts on a worn yet purposeful door here and a young sturdy door there, and inviting his friend pain to come in, and together warm themselves by a fire that is not their own and not intended for them. They try to smother every degree of warmth from that fire for themselves, even if in the process they selfishly cause it to burn out. It’s amazing how quickly they can take over a home, until their chilling presence is felt through every wall, under every cover, and even in the most safe and secret closets. Their presence is also swiftly felt throughout the neighborhood, and family after family rush to provide aid and raise the alarm. Eviction is the only solution, and the earlier the process is initiated the more realistic it is for it to occur.
On October 1, much to the surprise and dismay of everyone, authorities discovered Ammon’s door wide open and these two squatters silently and painfully making themselves at home. Ammon previously expressed all he could to tell us they had arrived and he needed them to go, but then he had to wait for some time and continue to endure while his expressions were being interpreted and finally understood by us and others. Upon their official discovery, eviction notices were swiftly served on October 2, and almost six months later a continuous round of measures have been performed to ensure their permanent eviction. The process has been incredibly difficult, and the pain has been endured with more nobility, trust, and courage than I can comprehend. With miracles and blessings, Ammon has proven to endure it well, and has been a constant reminder that this too shall pass. As we approach the end of this first “intensive induction” phase, the doors and windows in Ammon’s body have been reinforced, medical security systems have been installed, and forever there will be vigilant and wary guards ceaselessly searching the perimeter. If cancer should somehow pass through and enter again, it will not pass unnoticed this time.
For some the eviction process requires a full gutting of the home to completely eradicate the thieves’ influence and residue, not even an odor of their passing must remain. For some, due to the extensive alterations and procedures performed, the appearance will always be a visible indication that the intruders were once there. While for others, the process is different, or at least received differently, and the ending appearance to those outside looking in is that less extreme procedures were required. But no matter how extreme or unique the process is for each individual, one thing is the same and equally shared and understood among all survivors and their families, specifically that cancer was once here, and cancer might come to visit again.
That extraordinary key and its stealthy holder, sometimes have proven to be a match for even the best laid plans and defenses. Living life in fear of their return is understandable, yet unacceptable. We have received assurances that his return will not be allowed to occur, and we believe those assurances with all our hearts. But even without those assurances, though it is easy to say and much more difficult to do, that cancer and the threat of his return, cannot be allowed to destroy Ammon’s peace and joy.
The fire in Ammon’s hearth continues to burn strong, and it always will. The warmth and comfort it emits is somehow more intense than before. You are always invited to come warm yourself, and allow Ammon to be warmed by you. His door is always open to us. For us, he is a daily reminder of God’s concern and deep love for each of us. Together, each of our fires burn more brilliantly and bright.
Cancer and pain are two companions that are never far apart. They can’t do much without each other, in fact when they are separate they are virtually powerless. For many of us, pain is usually locked out in the harsh and freezing torrents and no matter how hard he pounds on our door we are not foolish or sympathetic enough to willingly invite him in and enjoy our company. Unfortunately, his companion, cancer, has an extraordinary key, perhaps more aptly described as a skeleton key. As a silent thief in the night, he uses this key on a seemingly random basis, unlocking the locks and bolts on a worn yet purposeful door here and a young sturdy door there, and inviting his friend pain to come in, and together warm themselves by a fire that is not their own and not intended for them. They try to smother every degree of warmth from that fire for themselves, even if in the process they selfishly cause it to burn out. It’s amazing how quickly they can take over a home, until their chilling presence is felt through every wall, under every cover, and even in the most safe and secret closets. Their presence is also swiftly felt throughout the neighborhood, and family after family rush to provide aid and raise the alarm. Eviction is the only solution, and the earlier the process is initiated the more realistic it is for it to occur.
On October 1, much to the surprise and dismay of everyone, authorities discovered Ammon’s door wide open and these two squatters silently and painfully making themselves at home. Ammon previously expressed all he could to tell us they had arrived and he needed them to go, but then he had to wait for some time and continue to endure while his expressions were being interpreted and finally understood by us and others. Upon their official discovery, eviction notices were swiftly served on October 2, and almost six months later a continuous round of measures have been performed to ensure their permanent eviction. The process has been incredibly difficult, and the pain has been endured with more nobility, trust, and courage than I can comprehend. With miracles and blessings, Ammon has proven to endure it well, and has been a constant reminder that this too shall pass. As we approach the end of this first “intensive induction” phase, the doors and windows in Ammon’s body have been reinforced, medical security systems have been installed, and forever there will be vigilant and wary guards ceaselessly searching the perimeter. If cancer should somehow pass through and enter again, it will not pass unnoticed this time.
For some the eviction process requires a full gutting of the home to completely eradicate the thieves’ influence and residue, not even an odor of their passing must remain. For some, due to the extensive alterations and procedures performed, the appearance will always be a visible indication that the intruders were once there. While for others, the process is different, or at least received differently, and the ending appearance to those outside looking in is that less extreme procedures were required. But no matter how extreme or unique the process is for each individual, one thing is the same and equally shared and understood among all survivors and their families, specifically that cancer was once here, and cancer might come to visit again.
That extraordinary key and its stealthy holder, sometimes have proven to be a match for even the best laid plans and defenses. Living life in fear of their return is understandable, yet unacceptable. We have received assurances that his return will not be allowed to occur, and we believe those assurances with all our hearts. But even without those assurances, though it is easy to say and much more difficult to do, that cancer and the threat of his return, cannot be allowed to destroy Ammon’s peace and joy.
The fire in Ammon’s hearth continues to burn strong, and it always will. The warmth and comfort it emits is somehow more intense than before. You are always invited to come warm yourself, and allow Ammon to be warmed by you. His door is always open to us. For us, he is a daily reminder of God’s concern and deep love for each of us. Together, each of our fires burn more brilliantly and bright.
Sunday, March 4, 2012
Checking In ...
Well we made it through another two weeks. It's taking longer for Ammon to bounce back from his treatments, but he's still enduring. Last weekend we had to spend a night at the hospital because he was having a ton of seizures from the steroids. He was looking kind of lethargic and I did not want another pancreatic issue. He also seemed to be in a lot of pain, I was giving him Tylenol or Oxycontin around the clock. Our doctor advised us to go to the hospital to have him checked. By the time I drove into the parking lot of Primary Children's, Ammon seemed so calm and happy, I thought maybe he just needed some fresh air and a good nap, I was tempted not to go in. It's hard for me to submit him to trauma-poking and prodding-when he isn't crying. I knew the moment doctors started evaluating him, he would start crying. He did-although he was crying significantly at home-and was crying so hard he couldn't seem to catch his breath and his oxygen sats were dropping. I reassured the medical staff that he was not having breathing issues before we came in, he was not sick, he just gets all worked up when we go there. He recognizes where we are. His lipase was a little elevated so they watched that and we gave him some extra medication to stop the seizure cycles. I knew he would be okay in a few days, when he was done with the steroids. The next day his seizures were still happening pretty often, but I felt okay taking him home (Brian was going out of town so I needed to go home). I know the longer we stay in the hospital our chances of not getting enough sleep and catching a virus go up exponentially by the hour.
The day after we were done with steroids, Ammon slept almost through the night and he was back to just having a few seizures. He walked in his walker today and I finally pulled his tooth out, the one we thought got knocked out while we were inpatient. It was just chipped and impacted in his gums. It had been hanging there for weeks, but again i don't like to inflict any extra pain on him. We go in on Monday for his next treatment. Hopefully just 3 more weeks left.
What in the world is she doing? She drug the bag of potatoes into the living room, took off her socks and stuck her feet in. I asked Brynn what she was doing and she just shrugged and said it felt good. She really likes pushing or pulling heavy things around so maybe that's what started it? Brian thought it would be fun for everyone to think of a caption for the picture, Like "Pota-TOES"
She cracks us up. She has learned how to copy laughs, like my mom's or mine, but her true laugh is the perfect giggle. Today she told me all about her "sister" named Marea and her friend named Dickle? I've never been around someone who has had imaginary friends, but she was definitely talking to them today and even asked if I liked Marea's pink dress. Then they both got sick and had to go home. They live with her teacher. I think I have mentioned before how she always talks about her teacher. She is always saying "My teacher can do that, or my teacher has that" Her teacher sounds like this amazing person who can do everything.
More Brynn: "Mom if I get more and more poop out I will turn into a little baby"
Coleson made this scarf at school. I am impressed. I asked if he could make one for me. Coleson just ended his basketball season. He made some improvement this year. He said his best skill is to bring the ball down the court and to pass it to the kid who always makes it. I cut Coleson's hair pretty short after this picture. He looked in the mirror and said "Mom, I didn't know I had ears that stuck out" My kids make me smile everyday. Life is good.
The day after we were done with steroids, Ammon slept almost through the night and he was back to just having a few seizures. He walked in his walker today and I finally pulled his tooth out, the one we thought got knocked out while we were inpatient. It was just chipped and impacted in his gums. It had been hanging there for weeks, but again i don't like to inflict any extra pain on him. We go in on Monday for his next treatment. Hopefully just 3 more weeks left.
What in the world is she doing? She drug the bag of potatoes into the living room, took off her socks and stuck her feet in. I asked Brynn what she was doing and she just shrugged and said it felt good. She really likes pushing or pulling heavy things around so maybe that's what started it? Brian thought it would be fun for everyone to think of a caption for the picture, Like "Pota-TOES"
She cracks us up. She has learned how to copy laughs, like my mom's or mine, but her true laugh is the perfect giggle. Today she told me all about her "sister" named Marea and her friend named Dickle? I've never been around someone who has had imaginary friends, but she was definitely talking to them today and even asked if I liked Marea's pink dress. Then they both got sick and had to go home. They live with her teacher. I think I have mentioned before how she always talks about her teacher. She is always saying "My teacher can do that, or my teacher has that" Her teacher sounds like this amazing person who can do everything.
More Brynn: "Mom if I get more and more poop out I will turn into a little baby"
Coleson made this scarf at school. I am impressed. I asked if he could make one for me. Coleson just ended his basketball season. He made some improvement this year. He said his best skill is to bring the ball down the court and to pass it to the kid who always makes it. I cut Coleson's hair pretty short after this picture. He looked in the mirror and said "Mom, I didn't know I had ears that stuck out" My kids make me smile everyday. Life is good.
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