Things are going well here, with the exception of sleep, but that is normal for us. Maggie has had difficulty adjusting to traveling and being with others and then coming back home and getting back into a routine. She has been sleeping in our bed, which has caused for an achy back for me, but hopefully we'll be able to get her feeling comfortable once again in her crib. We all sleep better in our own beds, I'm sure.
We had a very nice Christmas with family. Because of several health issues on my family's part, we were unable to celebrate with some family members. Everyone is very cautious with Maggie and her immunity, which we are grateful for. We hope to see those we were unable to see during Christmas at a later time.
What is next for us is a trip to the Almost Home Unit on Wednesday early morning for another spinal tap and chemo drug Vincristine. Maggie will most likely also have her anti-pneumonia drug, which she gets monthly. She will then go back on the dreadful steroids for 5 more days. It feels like we only just got off of them, as the memory of the week was just horrible. We don't anticipate Maggie feeling bad until about the next day or two after she begins the steroids. Therefore, we are getting any needed trips out of the way (to the grocery store, etc.).
Come Wednesday, we will be in week 22 of treatment. Our treatment protocol calls for 48 weeks, however, Dr. French has combined several protocol to give us the best result. Therefore, rather than 48 weeks, Maggie will be getting treatment for 2 years. Tomorrow, we will have been living our nightmare for 6 months. It seems hard to believe it has been that short (or long, however you look at it).
We went to church yesterday for the first time since Maggie was diagnosed. I was unable to hear the whole church service or sermon because of attending to Maggie's needs, but it talked about surrending everything to God and if we haven't done so, what is stopping us? I can't speak for Andy, but I stand in this category when it comes to Maggie's health. I am one who needs to be in control of everything, Maggie's health and treatment included. I have commented to Andy that sometimes I think I know Maggie's protocol better than Dr. French. I carry it in my calendar wherever I go and study it, thinking that maybe if I stare at it long enough, the end of treatment will come quicker. I long for her healing more than anything I've ever wanted. I pray daily, sometimes even screaming to God to heal my precious baby. But though I pray daily, I still cannot give up all of my control and give it to God. This is something I am very aware of and with time hope to be able to do so, but right now, all I can say is, I'm trying. Perhaps this was God calling to us through the sermon...
The day before Maggie was diagnosed, June 29, was the last time we had attended church. My parents were with us, trying to ease our mind throughout the weekend, after being told it was very likely that Maggie had cancer. I still remember the sermon from that Sunday. Though I don't have the details, it was about Jesus casting the demons out of a woman's body. I still think about that sermon sometimes and pray that God will cast out the cancer from Maggie's body.
Though God doesn't give us "signs," I'd like to think that perhaps these two sermons were meant for us-- maybe God's way of telling us Maggie's going to get through this. It's my infantile faith begging God for a sign that all will be well and we'll be able to watch Maggie grow up to be a strong woman. I just long for something to comfort me and tell me that she'll be okay.
Our 2008 has not been a party to say the least. It's been the worst year of our lives--from Maggie's diagnosis to Andy's having to sit a year out of school. I know that God doesn't owe us anything, but as we get ready for a new year, I do pray that it is much better than this one. We've been hit so hard, I can't imagine it getting any worse, but perhaps if God might smile on us and bless us this next year, we might be able to get through the hardships that we've encountered thus far.
We want to thank you for your continued support and prayers. Without you, I'm not sure how we'd be able to get through this. Please continue to pray for complete healing for our Dear Angel, Maggie.
Monday, December 29, 2008
Wednesday, December 24, 2008
Merry Christmas!
Well, it's official. We will be traveling like most of the rest of the country. We went in bright and early this morning (Maggie was not too impressed as she didn't go to sleep until around 1:00am last night) for more chemo and a count check. Maggie's counts look great. Her ANC (ability to fight infection) is at 1600, which is great, and her hemoglobin is holding steady at 8.6 (they don't transfuse unless it's under 8). Along with the chemo, Maggie also received her final flu shot for the year, which of course she was not too pleased.
So, we are going to my family's side this afternoon until Saturday. It will be nice to again celebrate with more family. Back when Maggie was diagnosed, we thought we would be home for Christmas due to low counts or even in the hospital, but being in this new phase of treatment, we are much more mobile and can do more "normal" activity.
We want to thank you all for your continued prayers. We pray that you also have a joyous holiday and Merry Christmas. Be thankful for all that you have and cherish those special moments with family.
Merry Christmas!
So, we are going to my family's side this afternoon until Saturday. It will be nice to again celebrate with more family. Back when Maggie was diagnosed, we thought we would be home for Christmas due to low counts or even in the hospital, but being in this new phase of treatment, we are much more mobile and can do more "normal" activity.
We want to thank you all for your continued prayers. We pray that you also have a joyous holiday and Merry Christmas. Be thankful for all that you have and cherish those special moments with family.
Merry Christmas!
Tuesday, December 23, 2008
Christmas Weekend
We are a bit delayed in our update. As we've said before, no news is good news. Last Thursday Maggie went in for low dose chemo (LD Methotrexate). We found at our visit that Maggie's ANC was 270. This was very low, however her monocytes were extremely high, so the idea was that her counts would be coming back up. We were awaiting Dr. French's okay to travel to Andy's family for Christmas. After seeing her ANC so low, I was very doubtful, but being that her monocytes were high, he said it was fine to go.
So, that's what we did this past weekend. We were able to celebrate Christmas with the Bixler's and also watch some of the Messiah on Sunday. It was good to see several people from the church who we hadn't seen since diagnosis. They were able to see Maggie and we were able to fellowship with them briefly.
We left late Sunday evening for the 3 hour trip back. Maggie has never been one to travel well, especially since her diagnosis. She actually did very well by sleeping the first 45 minutes and then talking to herself and eventually being entertained by me. Maggie has become the night owl, wanting to go to bed between 12:00am and 1:30am. We need to get her off of that cycle because both Andy and I are whipped by the end of the day. On the other hand, she does then sleep in until 9:30 or 10:00, which is nice.
Since we have returned from Bixler Christmas, Maggie has not wanted to sleep in her crib. She will sleep the first hour or two, but after that she will cry without ceasing until she is picked up and held. Eventually, after calming her down, we are able to put her in our bed so that we might all get some sleep. Not at all the ideal situation. It doesn't take her much to get set back.
Tomorrow we go back into the clinic for more low dose chemo. We will get her counts checked and hopefully will be given the okay to go back up to my family's side to celebrate Christmas. Continue to pray that Maggie will steer clear of any side effects to the low dose chemo she is getting weekly and daily. Pray that Maggie will not get any infections or viruses as she is around other people more often.
Thank you all for your prayers, emails and letters of encouragement, and gifts. We appreciate all the support we have received from those we know and those we've encountered through this experience.
So, that's what we did this past weekend. We were able to celebrate Christmas with the Bixler's and also watch some of the Messiah on Sunday. It was good to see several people from the church who we hadn't seen since diagnosis. They were able to see Maggie and we were able to fellowship with them briefly.
We left late Sunday evening for the 3 hour trip back. Maggie has never been one to travel well, especially since her diagnosis. She actually did very well by sleeping the first 45 minutes and then talking to herself and eventually being entertained by me. Maggie has become the night owl, wanting to go to bed between 12:00am and 1:30am. We need to get her off of that cycle because both Andy and I are whipped by the end of the day. On the other hand, she does then sleep in until 9:30 or 10:00, which is nice.
Since we have returned from Bixler Christmas, Maggie has not wanted to sleep in her crib. She will sleep the first hour or two, but after that she will cry without ceasing until she is picked up and held. Eventually, after calming her down, we are able to put her in our bed so that we might all get some sleep. Not at all the ideal situation. It doesn't take her much to get set back.
Tomorrow we go back into the clinic for more low dose chemo. We will get her counts checked and hopefully will be given the okay to go back up to my family's side to celebrate Christmas. Continue to pray that Maggie will steer clear of any side effects to the low dose chemo she is getting weekly and daily. Pray that Maggie will not get any infections or viruses as she is around other people more often.
Thank you all for your prayers, emails and letters of encouragement, and gifts. We appreciate all the support we have received from those we know and those we've encountered through this experience.
Tuesday, December 16, 2008
Settling in
Life has settled down for us a bit. Maggie has become more herself again, which we are happy to see. On Monday we went to see the nutritionist at Dayton Children's, after receiving a referral from Maggie's pediatrician. The nutritionist told us that we need to offer Maggie all table foods in hopes that she will begin to take more food. They also gave us some samples of high calorie drinks and gave us a list of high calorie foods. I still am a bit skeptical about the whole thing. The way the nutritionist spoke made it sound like it was so easy and that Maggie would just take the food. The thing is, we've been doing this (table foods) for quite awhile and she still isn't taking any food of substance. She plays with it and picks at it, but doesn't have much interest in putting it in her mouth. I don't see how it will change just by us going to the nutritionist and receiving guidance. We will see though, whatever we have to do, we will.
We go back to the hospital tomorrow to receive a monthly RSV shot. Maggie gets two shots, one in each leg. Then on Thursday we go back in for low dose Methotrexate. The hope is that Maggie's counts won't drop too low because if they do, family traveling will not be allowed. With the low dose chemotherapy drugs, the doctors try to regulate the dosages to keep Maggie's ANC low, around 1000. Being that she has just begun the low dose drugs, it might take a couple of rounds in order to regulate the dosages.
Thank you all for your continued thoughts and prayers.
We go back to the hospital tomorrow to receive a monthly RSV shot. Maggie gets two shots, one in each leg. Then on Thursday we go back in for low dose Methotrexate. The hope is that Maggie's counts won't drop too low because if they do, family traveling will not be allowed. With the low dose chemotherapy drugs, the doctors try to regulate the dosages to keep Maggie's ANC low, around 1000. Being that she has just begun the low dose drugs, it might take a couple of rounds in order to regulate the dosages.
Thank you all for your continued thoughts and prayers.
Saturday, December 13, 2008
It was a rough one
As Andy indicated in the post on Monday, we had a very rough week. The steroids are just not very kind to Maggie. She cried constantly from Sunday until Wednesday. Wednesday and Thursday she moaned whenever she was awake. So, I guess we moved from a cry to a moan--neither of them easy to handle.
On Thursday Maggie did not feel well. After eating during the morning, she got sick early afternoon and refused to eat after that. She would lay her head on our shoulder all day, clearly not feeling herself. She gagged and dry-heaved throughout the day. I thought that perhaps she was getting the stomach flu because she didn't eat for almost 18 hours.
On Friday, she continued to refuse to nurse in the morning, but did take some cereal and milk. We had an appointment for outpatient chemo on Friday and I feared that either they wouldn't start it or that they might admit us to prevent dehydration. Though Maggie wasn't eating much, she was definitely becoming more herself by talking and smiling again. We were so happy to see our Maggie back. You don't realize how much you miss that smile and babbling until you only see a solemn baby all the time.
We went to our appointment yesterday and they did in fact administer the chemo. It's a low dose of Methotrexate. She also started a chemotherapy that is oral that we will administer at home. She will take this basically the rest of her treatment. The drug cannot be administered with milk and so Maggie can't drink an hour before administration and must wait until 2 hours after. This provided a bit of a problem last night and Andy and I took turns entertaining Maggie. She hadn't really drank anything throughout the day and so she was ready to nurse some.
Maggie is beginning to eat a little better now, however she still gags after eating. Dr. French thinks that her uneasy stomach and vomiting is associated with the steroids. He described it as Maggie being on a high throughout the week and then once off steroids her body was trying to manage. We also think that Maggie might have some acid reflux as she continues to gag.
Our nights have still been very horrendous. During the time that she was on steroids, Andy or I held her quite a bit to ease her crying. I think she has grown accustomed to being held while sleeping again (seems like we are regressing to the newborn stage). Maggie will fall asleep immediately when held, but as soon as we put her in her crib she screams in panic or as Andy calls it, desperation. She is unable to soothe herself either. Last night we both camped out in the living room as I held and rocked Maggie in the chair and Andy slept on the couch in case I needed assistance. This worked for about an hour until Maggie woke from her sleeping cycle crying. We finally decided to give her Ativan and finally around 3:20am, Maggie was out (thank you Ativan). I was able to put her in her crib and she slept for about 3 hours.
Though you might not care for the details of our nights, they have been very challenging. I have been very patient with Maggie because I know that her sleep cycle is messed up due to drugs. Last night I did find myself getting a little frustrated and angry as she screamed in bed, but immediately slept in our arms when we picked her up. It's hard because prior to steroids we were getting back into a routine and schedule with Maggie sleeping better at night. We long for consistency and normalcy. We are tired of medications getting in the way of normal development. Maggie doesn't deserve all that she has encountered.
We are thankful that Maggie's happy demeanor is back, however, her food intake and sleeping has not yet returned. We pray that she will begin to eat again without having any gastrointestinal problems and that she will sleep better. We also pray that the low dose chemo drugs will not give her any side effects.
Thank you all for your continued prayers and support. They are much appreciated.
On Thursday Maggie did not feel well. After eating during the morning, she got sick early afternoon and refused to eat after that. She would lay her head on our shoulder all day, clearly not feeling herself. She gagged and dry-heaved throughout the day. I thought that perhaps she was getting the stomach flu because she didn't eat for almost 18 hours.
On Friday, she continued to refuse to nurse in the morning, but did take some cereal and milk. We had an appointment for outpatient chemo on Friday and I feared that either they wouldn't start it or that they might admit us to prevent dehydration. Though Maggie wasn't eating much, she was definitely becoming more herself by talking and smiling again. We were so happy to see our Maggie back. You don't realize how much you miss that smile and babbling until you only see a solemn baby all the time.
We went to our appointment yesterday and they did in fact administer the chemo. It's a low dose of Methotrexate. She also started a chemotherapy that is oral that we will administer at home. She will take this basically the rest of her treatment. The drug cannot be administered with milk and so Maggie can't drink an hour before administration and must wait until 2 hours after. This provided a bit of a problem last night and Andy and I took turns entertaining Maggie. She hadn't really drank anything throughout the day and so she was ready to nurse some.
Maggie is beginning to eat a little better now, however she still gags after eating. Dr. French thinks that her uneasy stomach and vomiting is associated with the steroids. He described it as Maggie being on a high throughout the week and then once off steroids her body was trying to manage. We also think that Maggie might have some acid reflux as she continues to gag.
Our nights have still been very horrendous. During the time that she was on steroids, Andy or I held her quite a bit to ease her crying. I think she has grown accustomed to being held while sleeping again (seems like we are regressing to the newborn stage). Maggie will fall asleep immediately when held, but as soon as we put her in her crib she screams in panic or as Andy calls it, desperation. She is unable to soothe herself either. Last night we both camped out in the living room as I held and rocked Maggie in the chair and Andy slept on the couch in case I needed assistance. This worked for about an hour until Maggie woke from her sleeping cycle crying. We finally decided to give her Ativan and finally around 3:20am, Maggie was out (thank you Ativan). I was able to put her in her crib and she slept for about 3 hours.
Though you might not care for the details of our nights, they have been very challenging. I have been very patient with Maggie because I know that her sleep cycle is messed up due to drugs. Last night I did find myself getting a little frustrated and angry as she screamed in bed, but immediately slept in our arms when we picked her up. It's hard because prior to steroids we were getting back into a routine and schedule with Maggie sleeping better at night. We long for consistency and normalcy. We are tired of medications getting in the way of normal development. Maggie doesn't deserve all that she has encountered.
We are thankful that Maggie's happy demeanor is back, however, her food intake and sleeping has not yet returned. We pray that she will begin to eat again without having any gastrointestinal problems and that she will sleep better. We also pray that the low dose chemo drugs will not give her any side effects.
Thank you all for your continued prayers and support. They are much appreciated.
Monday, December 8, 2008
Rough stretch.
Today we received confirmation of Maggie's good test results from Friday--no sign of leukemia in her bone marrow or spinal fluid. We're very grateful for that. I hope that doesn't get too lost in the rest of this post. The troubling thing is that we received the news from Dr. French in person--during a visit that wasn't scheduled. Maggie has been completely transformed by the steroids and it's so hard to witness.
She started her doses on Friday and she was very loud and talkative through Saturday. But Sunday, she started whining/moaning/crying and she hasn't really stopped since. We paged the on-call doctor Sunday evening because we couldn't get Maggie to stop crying after she woke up from a nap. That was very unlike her. We tried to help with some medicines to calm her down, but it didn't work much. Maggie was up almost all night last night--still moaning and crying. The best we could do was to take turns walking laps around our house while cradling her. She slept a few hours total (maybe) and we called the doctor again this morning. We ended up going in to have her looked over to make sure that there isn't anything else causing her to be so miserable. As bad as she was the last time, she's been worse this time and we couldn't figure out why.
Dr. French is confident that what we are seeing is mostly a result of the steroids and the chemo. She is probably a bit more irritated and in pain due to a new enemy--two more new teeth close to busting through. That's the only other problem that was evident in her exam. So that's not helping. But everything we described and what he saw was within what is expected with the drugs that she's on. He encouraged us to increase some of her pain medicines and she has been quite sedated and sleepy most of the evening. She looks so tired.
So, it's been really tough--no one is getting sleep around here. Everything takes such a team effort and it is hard for anyone to get much done. Much more than that, Maggie is absolutely miserable--her body trembles when she is awake. She clutches her face in pain. Her physical appearance has changed again too--dark sunken eyes, and big saggy steroid cheeks. No child should have to go through this.
Sorry to be so dramatic tonight. There's just no sense in trying to describe a rosy household here. This will last a few more days--Tuesday night is her last dose of the steroid and it'll take some time to leave her system. We can't wait. Please think good thoughts and send prayers for Maggie.
She started her doses on Friday and she was very loud and talkative through Saturday. But Sunday, she started whining/moaning/crying and she hasn't really stopped since. We paged the on-call doctor Sunday evening because we couldn't get Maggie to stop crying after she woke up from a nap. That was very unlike her. We tried to help with some medicines to calm her down, but it didn't work much. Maggie was up almost all night last night--still moaning and crying. The best we could do was to take turns walking laps around our house while cradling her. She slept a few hours total (maybe) and we called the doctor again this morning. We ended up going in to have her looked over to make sure that there isn't anything else causing her to be so miserable. As bad as she was the last time, she's been worse this time and we couldn't figure out why.
Dr. French is confident that what we are seeing is mostly a result of the steroids and the chemo. She is probably a bit more irritated and in pain due to a new enemy--two more new teeth close to busting through. That's the only other problem that was evident in her exam. So that's not helping. But everything we described and what he saw was within what is expected with the drugs that she's on. He encouraged us to increase some of her pain medicines and she has been quite sedated and sleepy most of the evening. She looks so tired.
So, it's been really tough--no one is getting sleep around here. Everything takes such a team effort and it is hard for anyone to get much done. Much more than that, Maggie is absolutely miserable--her body trembles when she is awake. She clutches her face in pain. Her physical appearance has changed again too--dark sunken eyes, and big saggy steroid cheeks. No child should have to go through this.
Sorry to be so dramatic tonight. There's just no sense in trying to describe a rosy household here. This will last a few more days--Tuesday night is her last dose of the steroid and it'll take some time to leave her system. We can't wait. Please think good thoughts and send prayers for Maggie.
Saturday, December 6, 2008
Good report, so far.
I wanted to update everyone on Friday's appointment. It was a pretty big one for Maggie as there was a lot going on. She had chemo inserted into her spinal fluid, and some fluid drawn out to check it for leukemia cells. Also, her treatment protocol included a check on her bone marrow since she is transitioning from one phase of treatment to another. Dr. French took a brief look at her spinal fluid and her bone marrow and thought they looked good. We'll get final results in a couple days, though. We're excited to get more peace of mind--confirmation that Maggie's in good shape so far. So that is a blessing. Maggie's counts were good, too.
Maggie also got a dose of vincristine, a chemo drug that goes through her IV. She started a new round of steroids Friday as well--she'll get two doses per day through Tuesday night. For those who witnessed Maggie's birthday party, you know the effect of steroids. They make her act much differently than normal--fussier, louder, more impatient. But, the steroid (dexamethazone) is actually good cancer fighting drug, so we'll take it.
Dr. French was very happy with how Maggie is looking. He continues to demonstrate a lot of care and warmth toward Maggie. He's a good doctor, and a good advocate for Maggie through all of her treatment. We've grown very comfortable with him and have appreciated how steady he is for our psychological well-being.
While we were at the hospital, we saw that the hematology/oncology floor is very busy--there are a lot of kids with fevers. Not uncommon this time of year, I guess. But it made us more grateful that we've avoided fevers for a couple of weeks now. It is good to be home.
Thanks.
Maggie also got a dose of vincristine, a chemo drug that goes through her IV. She started a new round of steroids Friday as well--she'll get two doses per day through Tuesday night. For those who witnessed Maggie's birthday party, you know the effect of steroids. They make her act much differently than normal--fussier, louder, more impatient. But, the steroid (dexamethazone) is actually good cancer fighting drug, so we'll take it.
Dr. French was very happy with how Maggie is looking. He continues to demonstrate a lot of care and warmth toward Maggie. He's a good doctor, and a good advocate for Maggie through all of her treatment. We've grown very comfortable with him and have appreciated how steady he is for our psychological well-being.
While we were at the hospital, we saw that the hematology/oncology floor is very busy--there are a lot of kids with fevers. Not uncommon this time of year, I guess. But it made us more grateful that we've avoided fevers for a couple of weeks now. It is good to be home.
Thanks.
Thursday, December 4, 2008
"Well" Visit
Andy took Maggie to her pediatrician yesterday for her 1 year "well" visit. Dr. Taylor, her pediatrician, had called a month or so ago telling us that when Maggie was doing better, she wanted to see her. This visit found Maggie's growth percentiles follows--90% head circumference, 75% height, 30% weight. Though the 30% isn't a major problem, it is more noteworthy because she used to be in the 90th percentile in weight as well. It has now been over 5 months since her diagnosis and she has gone from about 19 pounds to 21. Not enough growth, although Dr. French (her oncologist) predicted that this would probably happen. However, Dr. Taylor gave us a referral to the nutritionist and a feeding evaluation. Dr. Taylor doesn't think that Maggie is getting enough calories, especially since she is not eating any solid foods. So, another round of doctor visits for us. We are unable to schedule visits until January, however, so maybe between now and then Maggie will prove to us that she can eat more.
Today I decided to start as if Maggie was just beginning solids by mixing breastmilk with baby cereal. She took several spoonfuls, which is a start. We'll try to progress into other foods like we did when she was younger. Though I know that I should not get down about all of this, I was a little upset yesterday. Sometimes I feel as if our parenting gets judged upon, perhaps Maggie's lack of solid food interest and loss of weight is a reflection on our parenting. Since she is primarily breastfed, I feel a large responsibility for her lack of weight gain and it saddens me. Maybe this doesn't make sense and maybe I can't explain it completely, but when I found out about the referral, I just felt that this was one more example of how our life isn't normal and Maggie is very different from other children her age.
Tomorrow morning at 8:00 Maggie begins her next phase of chemotherapy. She will get a spinal tap with chemo and a push of the chemo drug Vincristine. Maggie will also get her monthly pneumonia medicine which takes about an hour to infuse. We will most likely be in the Almost Home unit of the hospital all morning tomorrow. I have taken a personal day so that I can be with Maggie, especially since she will not be able to eat after 5:00 am tomorrow. It might be a tough morning for us since Maggie wakes up about every hour and thiry minutes to two hours to feed.
Pray that Maggie's spinal fluid will be clear of leukemia cells, that she will continue to respond well to the chemo, that she will not get any side effects, and that she will not be to fussy as she will begin 5 days of steroids. Thank you all for your continued thoughts and prayers. They are very much appreciated!
Today I decided to start as if Maggie was just beginning solids by mixing breastmilk with baby cereal. She took several spoonfuls, which is a start. We'll try to progress into other foods like we did when she was younger. Though I know that I should not get down about all of this, I was a little upset yesterday. Sometimes I feel as if our parenting gets judged upon, perhaps Maggie's lack of solid food interest and loss of weight is a reflection on our parenting. Since she is primarily breastfed, I feel a large responsibility for her lack of weight gain and it saddens me. Maybe this doesn't make sense and maybe I can't explain it completely, but when I found out about the referral, I just felt that this was one more example of how our life isn't normal and Maggie is very different from other children her age.
Tomorrow morning at 8:00 Maggie begins her next phase of chemotherapy. She will get a spinal tap with chemo and a push of the chemo drug Vincristine. Maggie will also get her monthly pneumonia medicine which takes about an hour to infuse. We will most likely be in the Almost Home unit of the hospital all morning tomorrow. I have taken a personal day so that I can be with Maggie, especially since she will not be able to eat after 5:00 am tomorrow. It might be a tough morning for us since Maggie wakes up about every hour and thiry minutes to two hours to feed.
Pray that Maggie's spinal fluid will be clear of leukemia cells, that she will continue to respond well to the chemo, that she will not get any side effects, and that she will not be to fussy as she will begin 5 days of steroids. Thank you all for your continued thoughts and prayers. They are very much appreciated!
Tuesday, December 2, 2008
Thanksgiving Success!
Hello everyone. Hopefully everyone enjoyed their Thanksgiving holiday. We certainly did. We have much to be thankful for. We are very happy to report that we had an uneventful weekend and that we enjoyed the company of our family for the holiday. Maggie enjoyed being held by many--something she wouldn't cooperate with a month ago. She has remained free of infections and has no major cold symptoms. So our decision to go forward with holiday plans was a good one. It was so good to see everyone--both family members whom we have seen periodically throughout Maggie's treatment, as well as extended family that we haven't been able to see since Maggie's diagnosis. With Maggie responding well to treatment so far, the Thanksgiving holiday has new and special meaning to us.
Maggie's counts are recovered fully now, too. Since she wasn't as high as she needed to be last week when she was last checked, she stayed on her Neupogen through the weekend (this is the drug that helps her recover the infection fighting white blood cells). As a result, she now has more of these healthy cells than she would normally (we were hoping for a count of 500 by Thanksgiving, on Monday she had almost 15,000!). This demonstrates the power of the Neupogen to do its job; one of the many medical advances that is benefitting Maggie's treatment and recovery. This drug helps her to recover from chemo more quickly and to avoid infection. Years ago, the chemo couldn't be administered nearly as often because it took a longer time for the white cells to recover to a safe level.
Friday we return to the fourth floor of the hospital--but only for part of the day. She'll have a spinal tap (with 3 chemo drugs inserted into her spinal fluid), an IV chemo, and a shot that helps prevent pneumonia. It will be nice to go home after all of the drugs are administered instead of staying in the hospital. Though treatment is a little lighter now that we've gotten this far into treatment, we still have lots of appointments scheduled for the next few weeks. So that's frustrating. Most frustrating of all? Maggie will have 5 days of steroids starting this weekend...which robs us of our "normal" Maggie. We know that it is an important part of her treatment, so we put up with it, of course.
Lastly, we have a bit of fun news regarding Maggie. For 5 months since Maggie's been diagnosed with Leukemia, we have asked the doctors (sometimes jokingly) if some of her symptoms could be caused by teething. It has turned into the running joke at our house--low-grade fever? She must be teething. Her sleep patterns changed? Must be a tooth about to poke through. At other times we have wondered if she would ever be able to chew food--she had no teeth. Until Sunday, that is. Whitney stuck her finger in Maggie's mouth to find that a tooth on her bottom has indeed poked through. It has grown quite a bit in the two days since. It only took about 14 months to pop through. Given all that she has gone through, this must seem very minor to her. She hasn't seemed to be bothered at all, which makes us very, very happy.
Sorry for the long post, and for the long delay between posts. We hope you all enjoyed your holiday and that you continue to appreciate the health of your children and families.
Maggie's counts are recovered fully now, too. Since she wasn't as high as she needed to be last week when she was last checked, she stayed on her Neupogen through the weekend (this is the drug that helps her recover the infection fighting white blood cells). As a result, she now has more of these healthy cells than she would normally (we were hoping for a count of 500 by Thanksgiving, on Monday she had almost 15,000!). This demonstrates the power of the Neupogen to do its job; one of the many medical advances that is benefitting Maggie's treatment and recovery. This drug helps her to recover from chemo more quickly and to avoid infection. Years ago, the chemo couldn't be administered nearly as often because it took a longer time for the white cells to recover to a safe level.
Friday we return to the fourth floor of the hospital--but only for part of the day. She'll have a spinal tap (with 3 chemo drugs inserted into her spinal fluid), an IV chemo, and a shot that helps prevent pneumonia. It will be nice to go home after all of the drugs are administered instead of staying in the hospital. Though treatment is a little lighter now that we've gotten this far into treatment, we still have lots of appointments scheduled for the next few weeks. So that's frustrating. Most frustrating of all? Maggie will have 5 days of steroids starting this weekend...which robs us of our "normal" Maggie. We know that it is an important part of her treatment, so we put up with it, of course.
Lastly, we have a bit of fun news regarding Maggie. For 5 months since Maggie's been diagnosed with Leukemia, we have asked the doctors (sometimes jokingly) if some of her symptoms could be caused by teething. It has turned into the running joke at our house--low-grade fever? She must be teething. Her sleep patterns changed? Must be a tooth about to poke through. At other times we have wondered if she would ever be able to chew food--she had no teeth. Until Sunday, that is. Whitney stuck her finger in Maggie's mouth to find that a tooth on her bottom has indeed poked through. It has grown quite a bit in the two days since. It only took about 14 months to pop through. Given all that she has gone through, this must seem very minor to her. She hasn't seemed to be bothered at all, which makes us very, very happy.
Sorry for the long post, and for the long delay between posts. We hope you all enjoyed your holiday and that you continue to appreciate the health of your children and families.
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