Sermons

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.

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!

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.

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.

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.

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.

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.

"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!

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.

Thanksgiving Update

It feels as if we have been spending a lot of our time in the clinic lately, and today was no different. A day of count checking became another platelet transfusion. Maggie's platelets were at 28,000--borderline for a transfusion. Due to the holiday and weekend, they decided to transfuse just to be on the safe side. Maggie's hemoglobin was holding steady at 12,000, which is very good. Her white count has tripled, going from 600 on Monday to 1800 today. Her ANC was at 400. It hasn't gone up much in the last two days, but her baby cells, monocytes, are very high so these cells will be boosting her ANC as the week goes on.

With that said (which it all might have been confusing), Dr. French has given us the go ahead for the holidays. He had originally said that her ANC needed to be at 500 in order for us to go, but he thinks that within the next day or so it will be at that number. Maggie will continue on Neupogen throughout the week to continue to boost her counts. She will be at risk for infection, but more so, risk for fever, since her ANC is not high enough, but hopefully we can avoid both of these. We will need to be very careful, with lots of hand washing, and those who are sick will need to keep their distance. Hopefully we can make it through the holidays without any problems or surprises.

So with that, we are off to celebrate the holidays tomorrow. It will be nice to get away from Dayton and try to feel as if we are living the "normal" life. Thank you all for your continued prayers. Please pray that during this time, Maggie will not encounter any infections or fevers. Also, as it is Thanksgiving, we are thankful that we have this opportunity to celebrate with family, seeing as almost 5 months ago we didn't know if this would be possible. Be thankful for all that you have, especially health. Never take that for granted.

Clinic update

Maggie spent 6 hours in the clinic today getting a blood transfusion and bloodwork--it took a long time. Her platelets are in good shape, so no repeat of last week's drop just yet. She needed blood because her hemoglobin was below 8 (7.1) whereas last week she was at 8.3 and 8.7 for the two times that she was checked.

Her white count and ANC (which are important to track for our hope to see family and to travel for Thanksgiving) have more than dropped in half since Friday. Her ANC is at 380 (it was at 1,100 Friday). Dr. French would like to see it reach 500 for us to keep our holiday plans. So the question is whether or not Maggie is still dropping from the chemo 10 days ago, or if she has bottomed out. If she has already reached her bottom, it wouldn't take much recovery to reach 500. But if she is going to drop further for another day or two, then it will be hard to recover in time for Wednesday's pre-Thanksgiving blood count check. We're glad that she dropped more (for the sake of her chemo's effectiveness) and are now ready for it to bounce back so we can visit with our families' and eat some Turkey like old times. We'll keep you posted.

On another note--many of you know that Maggie has always enjoyed her books. Typically, she reaches for them when she wants to be read to, or else she stops fussing if we sit her on our lap and go through a big stack of her books. She loves to turn the pages, point at animals and talk to them. She has had the endurance and attention for 30 minutes of reading since she was very young. Well, this evening she pulled some new tricks. She was playing on the floor while Whitney and I sat near her on our couch. Then, she grabbed one of her books, held it up in the air towards us, carefully placed a longing look on her face, and verbally pleaded for us to read to her (well, she repeated some of her favorite syllables, "da, da, da" or "mmm, mmm, mmm."). It was impossible to resist. And very cute.

It is hard to communicate the emotional rollercoaster that we encounter on a daily basis as we often experience anxieties, worries, fear, regret, etc. But there are also very normal moments of joy that any parent would expect to encounter with a 13 month old. She is very sweet and is generally a very happy baby, despite all that she has to go through. We enjoy watching her learn new things and express herself in different ways. We just need to continue to hope and pray for her treatment to be successful and for her to stay free of relapse and infection.

Day in the clinic

This morning we went to the clinic to check Maggie's counts--we assumed her hemoglobin would be low enough for a transfusion based on where it was the other day. As it turns out, her hemoglobin (red blood cells that carry oxygen to the body through the bloodstream) were steady from Monday--8.7--no blood transfusion needed. However, her platelets and white counts dropped significantly.

Maggie did receive a platelet transfusion today. She was at 35,000 or so platelets on Monday, and they always transfuse at about 20,000. Today she was at 5,000 (normal range is between 140,000 and 440,000). This is easily the lowest her platelets have ever been, and more than likely she was at risk of complications if she were to start to bleed somewhere or hit her head. Platelets help the blod to clot, so bleeding is a problem when they get this low. Surprisingly, she wasn't showing any signs of being low on platelets (red spots on the skin, easy bruising, or bleeding without clotting). It is a good thing the doctors wanted to check her again this soon after our last visit.

Her white blood count is at 1,200, and her ANC is about 1000. This is down from 11,000 and 10,000 on Monday. So that's a big drop, especially since she's on Neupogen, the drug that helps her to recover white cells more quickly. She'd probably be at zero if she wasn't on Neupogen, I would guess.

Maggie probably has another 3-4 days of her counts dropping before they start to recover. The further she gets toward zero on her white count means she is more likely to get the full effect of the chemo. If she doesn't go all the way to zero, she might recover enough for us to attend some family Thanksgiving celebrations, which we'd love to do. We haven't seen some of our family members in a long time.

Monday morning we go to the clinic and we've been told to expect a blood transfusion, and maybe more platelets. Please continue to pray for uneventful days, weeks, and months for Maggie.

Plugging away

Andy took Maggie to the clinic yesterday afternoon to check her counts and see how she was doing, especially after having fevers Sunday and Monday (Maggie's last fever was Monday morning--probably as the last of the ARA-C was leaving her body). Maggie's cultures were negative, so the fevers were most likely from the chemotherapy (which is standard protocol for us now). Dr. French was pleased to see Maggie doing well. She even managed to eat peaches in front of him--which I asked her if she was trying to impress him as she doesn't eat many solid foods. Maggie's hemoglobin and platelets were borderline low, so home care is coming out on Friday to do a CBC to determine if she needs transfusions. Her white count was 11,000 and her ANC was 10,000 (both being very high numbers). She is still on the rise from her last Neupogen shots. She should be falling very soon and Dr. French seems to think that ARA-C will suppress her counts more than any other drug she's had thus far.

Andy asked if we would be able to go home for Thanksgiving and he was not as positive as we had hoped. He says that it is all count dependent, but that he thinks she might be at her low next week. We will wait and see. Maggie has suprised us before by recovering quicker than we thought. I hope this might be the case again this time around.

As for now, we will wait for her counts to recover at home, enjoying the normalcy of life. I have learned that to share future plans seems to "jinx" us. We have learned over and over again that there are no such things as plans anymore. However, in looking at Maggie's protocol, after she has recovered her counts, which will take us to the beginning of December, Maggie will go into the clinic for weekly chemotherapy treatments. She will continue this for 8 weeks before being admitted again for a 5-day chemotherapy treatment. We hope that during these next 10 weeks, we will not experience any drama. We'd like to stay out of the hospital for those 10 weeks if at all possible.

Please pray that the chemotherapy will do its job of killing any remaining leukemia cells, that she will not get any fevers, infections or mouth sores, and that her counts will recover quickly once hitting bottom.

Going home

Well it appears that Dr. Dole is going to let us go home this afternoon. Maggie is still running fevers today and doesn't seem very happy, but she is safe to go home because her ANC is plenty high. Dr. Dole is assuming that her fever is from the ARA-C, which is what we've suspected as well. We'll get another dose of antibiotic this afternoon just to be safe and will then start the paperwork process to send us home. If she continues to fever tomorrow we'll contact the clinic to arrange for her to get more antibiotics. She'll also start Neupogen tomorrow in anticipation of her counts dropping (this drug jump-starts the cell recovery process in her bone marrow). She'll be on Neupogen for 7-10 days hopefully, or however long it takes for her counts to recover.

We're happy to be going home but will have to pay close attention to Maggie to make sure she's feeling well. This chemo seems to have hit Maggie hard, and we've been told to expect mouth sores this week. Hopefully that doesn't happen.

As always it's hard to watch Maggie not feeling well, but we are happy to be through this round of treatment and into a lighter phase for a while.

Late night fever

As we have alluded to before, Maggie tends to get a fever right before we are scheduled to go home after getting chemo, or else soon after we get home. It has happened quite a few times in a row. This weekend of chemo seemed to have a high chance of that happening again because this chemo is so very potent and a high dose, and because ARA-C actually has fevers among its listed side effects. Tonight, by 1:00 she had a 101.8 fever and she threw up the Tylenol that they gave her. Whitney can tell when she feeds her that she has had some nausea the last half day or so. She also threw up earlier when we reached to pull some popcorn from the roof of her mouth. So, Maggie's not feeling great from the chemo. As I type this, she is done with her last dose of ARA-C, and will get the injection of Peg-Asparaginase around 7 or 8 this morning--that's the other chemo drug that works in tandem with the ARA-C. They are drawing her cultures and will bring antibiotics in soon.

Now the question will be whether or not we can go home as scheduled this afternoon. The doctors often let us go home with a fever after giving her IV antibiotics as long as she has a decent ANC (and some ability to fight a possible infection). It is probable that her ANC will be okay for a few more days, but by mid-week she'll probably be to zero again. So, we don't know if they'll let us go home or not. Whitney has been so anxious to go home that she has been feeling sick to her stomach this evening while Maggie gradually grew warmer. We have a lot scheduled for Monday and we'll have to cancel some things if we're still here. Plus, things are just better at home.

Prayers are appreciated for Maggie's comfort, for minimal side effects from this chemo, no infections, and a trip home as soon as possible. We'll keep you informed.

Chemotherapy update

Maggie was admitted yesterday morning for her last dose of chemotherapy in this phase of her treatment. She is getting 4 doses of High Dose ARA-C and 1 Peg shot after the 4 doses. We were pleasantly surprised yesterday when we came into the hospital to find that Maggie would not need a catheter or IV fluids throughout her stay. The reason for this is that this type of chemo is metabolized in her liver unlike the other chemo drugs that are metabolized in her kidneys. She will stay off of the IV fluids as long as she continues eating and drinking (one and the same). I ended up taking a personal day yesterday because of Maggie's admittance. I wrestled as to whether I should do so, as I don't like to miss work, but I felt that being with Maggie was much more important, especially as she was being admitted (it really should have been a no brainer). It's a good thing I did so or Maggie would have been on IV fluids as she doesn't eat or drink anything during my absence. She likes to hold out.

So, yesterday at 11:00am she began a 3 hour infusion of High Dose ARA-C. She gets the drug every 12 hours for a total of 4 times. After her last dose, 3 hours later they will give her a Peg shot. She has gotten this shot 2 other times and by the second time, when they came in to give it to her, she began to cry--she knew what was coming. Along with these two chemo drugs, Maggie is getting steroid eye drops every 4 hours. She screams and of course closes her eyes so that we must pry them open to drop the liquid in. High Dose ARA-C can cause a form of pink eye which we've been told looks very bad and is painful. She'll get these eye drops up until 48 hours after the chemo is completed.

We have currently completed 3/4 doses of HD ARA-C. Maggie has been doing very well so far. She has enjoyed driving around in her red car and visiting the fish tank in the lobby of the hospital. We have multiple stuffed animals, all of which she calls "da," and each are equally as important as the next. We also are using an exer-saucer/gym as our own "physical therapy" to help strengthen Maggie's legs. We've tried this toy in the past, but because of her catheter it was a bit difficult to get her in the sling.

We are hoping to leave the hospital tomorrow early afternoon. Maggie will receive her Peg shot around 6:00am tomorrow morning (it might be an early morning), and we will then wait for the doctor to do rounds. Once rounds are complete, paperwork will be filled out and we'll be allowed to leave! I continue to feel Maggie's head periodically for fevers because that will be what keeps us here longer. I just pray that she doesn't get a fever this time.

Please continue to pray that Maggie will not feel any of the side-effects of the chemo, that she will not get any infections, fevers, or mouth sores. Pray that things will be routine and we might be able to go home tomorrow.

Full of surprises

We have not updated in some time. We apologize for that. Things have been very busy here--it seems whenever we are home, we try to get as much as we can done, while entertaining Maggie and keeping up our work schedules.

We went to the clinic on Monday to get counts checked. Maggie was about at the bottom, with an ANC of 20 and her hemoglobin and platelets also very low. They scheduled an appointment at the clinic for this early morning, warning us that we might be spending a bit of time while Maggie got platelet and blood transfusions, due to her low counts. They assumed that she would most likely bottom out even more. So, early this morning, we lugged Maggie's toys and my work to the clinic thinking we would be there for several hours.

Maggie surprised us, however, with a whopping 4,000+ ANC, normal hemoglobin, and borderline platelets. So, with this news, we were told Maggie will stay on schedule and be admitted on Friday for our last chemotherapy treatment in this phase. After this chemo treatment, our next inpatient stay for chemo will be in 8 weeks.

Thank you for your continued prayers. We saw prayers answered through the quick recovery of counts for Maggie. Please pray that this next chemo treatment will do its job, while not giving Maggie any of its side effects. This next treatment can cause fevers--please pray that Maggie doesn't get any fevers and nothing will postpone us from leaving the hospital after the treatment is over.

On another note, if you look at the post prior to this, you'll see a video that we took of Maggie the other day. Take a look sometime!

Laughing Maggie

We have had some good evenings with Maggie. Here's a short video of her laughing away.

Virus?

Andy called the clinic today to find out about Maggie's cultures that were taken on Wednesday. The cultures were negative which means Maggie probably doesn't have a bacterial infection. What is causing the fever is unknown so it might end up being a virus. The last 2 fevers she has had have been viruses. My theory is with each fever she doesn't quite get rid of the virus and when she is given chemo, it comes back. Whatever it might be, I'm growing tired of the worry of fevers.

Though Maggie has had some low-grade fevers the last couple days, she has been in fairly good spirits. Andy was with her all day long today and normally she will cry quite a bit with him, but she played and had a good day. Andy even observed her when she woke up from her nap, sit up from a laying down position on her own. This is the first time she has done this, and I missed it. I asked her to do it again, but she wouldn't. Sooner than later she'll start moving through those milestones.

Please continue to pray that Maggie's fevers will go away, her virus will go away completely, her counts will recover, there will be no more infections, and she will feel good.

What plans?

Well, I am finished explaining the plans for the next week. I should have known better than to plan. We went to bed last night and by 4:00 am, Maggie was feeling warm. I just started praying, please, no fever. But, it happened--by 7:30 (and probably before) she was 101 degrees. We waited for the clinic to open at 8:00 and went in to start our much regular routine of blood cultures and antibiotics. We probably should have gone into the ER earlier, but I just didn't want to be in there for 4 hours knowing that the clinic would be open in a couple of hours.

So, with the bags that were unpacked and clothes that were unwashed, we turned around--hardly 12 hours being home. After the cultures and antibiotics, as well as some anti-nausea medicine, we were allowed to go home. Maggie's counts are at their peak and because they are good, they told us we could go home. However, we were told that because they are at their peak, they will quickly drop and if and when they do and she has more fevers or her cultures come back positive, we will probably be admitted into the hospital for IV antibiotics.

So for now, it's a waiting game. We pray that her cultures come back with no bacteria in her blood, that her fevers stop, her counts won't drop to where she is neutropenic, and that Maggie will feel good. And we pray for NO more surprises!

We're home

We arrived home tonight around 7:30. How nice to actually get through a scheduled chemotherapy treatment without any bumps (fevers). The five days of chemo went as smoothly as it could. We were all very happy to get home tonight as hospital visits are beginning to feel a bit like jail. The plan now is for Maggie to begin Neupogen to help her counts to recover quicker as the last five days of chemo will knock her pretty low. We will go back into the clinic on Monday to get her counts checked and if her counts recover, we'll be back into the hospital for a 3 day chemotherapy treatment on Friday the 14th.

So for now, we will enjoy the last of Indian summer and enjoy being in the comforts of our own home again. Hopefully with this next week and a half Maggie will begin to explore her surroundings more and even explore the idea of crawling. I just hope we can live as normal a life as possible without having any hiccups.

Please pray that Maggie's counts will recover quickly, she will not have any infections or fever, and Maggie will feel good.

Halloween Bumblebee

Sweet Maggie dressed as a bumblebee for Halloween this year. She rode in her red car to the first house for trick or treating and after a strange man got in her face, she was finished with that. I ended up carrying her the rest of the way. Though she wasn't sure about her hat in a couple of these shots, she got used to it and was a little cutie.

The weather cooperated and we had a good time, for the most part. Our candy is sitting at home, waiting for us to give it some attention. Hopefully in a couple days we'll be there, relaxing and enjoying our time with a healthy Maggie.

Chemo continues

Well, after another visit to the clinic early this morning, we were given the go-ahead to begin chemotherapy. Maggie's ANC had to be at 500 and it was at 700 this morning, so we made our walk up to the inpatient oncology floor. Once on the floor we quickly found a red car for her to cruise. This will be our entertainment and exercise for the next 5 days. She will be getting Cytoxan and VP-16, a 5 day infusion of a couple of hours a day. Currently, they are giving her 4 hours of IV fluids to help boost her levels and then she will get the most unfortunate urinary cathater. They give her Ativan to help with the procedure, but it doesn't do much.

Our neighborhood had trick-or-treating last night so we dressed Maggie up for the occasion. I will post pictures of her later this afternoon.

Pray that this next round of chemo will go routinely, that Maggie will not get any fevers or mouth sores, and that she will be in good spirits while in the hospital.

Chemo postponed

We went into the clinic early this morning hoping to start Maggie's next chemotherapy treatment. However, her counts were not at their appropriate numbers. All of her numbers look good except for her ANC. It needs to be 500 in order to begin treatment and it is currently at 310. It seems to have taken a hit from the virus that she probably has. Her cultures have come back negative (well one of them did, the other got lost), so I guess when this happens it means that there is a virus. So, for now, we must wait for her ANC to come back up. The plan is to come back into the clinic on Friday morning and see if her ANC has recovered. With her ANC as low as it is, it means that we cannot be indoors with crowds. When her ANC was low, we used to go outside and walk around or sit on restaurant patios. With the weather growing cold, it's going to be hard to do this. We can only hope that winter is not a bitter one so that we might escape the indoors every now and again.

Maggie's mouth sores have healed. Please continue to pray for her counts to recover, for her to get rid of this virus, that she might be able to sleep soundly at night, and that she continues to be in good spirits. Also, pray that we don't get too far behind schedule. We will be a little over a week behind. Though I know my plans mean nothing in the scheme of things, I'd really like to be finished with the heavy chemotherapy before Thanksgiving. Thanks.

Fever again

We visited the ER last night because Maggie was running a 100.5 fever for over an hour. If the fever doesn't get above 101 degrees, however is 100.5 or greater for over an hour, we must go in to get her blood cultured and begin antibiotics. We spent about 3 1/2 hours in the ER and were again pleasantly suprised to be able to go back home. We have been told in the past that when we go to the ER, we should expect to be admitted. Maggie was able to go home because though she had a fever at home, they didn't consider to have a fever when we got to the ER and she was acting very good. Throughout the day, as well as in the ER, she was smiling and babbling. She didn't act sick at all. This is a blessing that although she has been fevering quite a bit, she doesn't seem to be too bothered by it.

We went back into the clinic this afternoon for a scheduled visit to look at Maggie's counts (her platelets were low the previous week). Because of our trip to the ER last night, this visit also became a time for them to give her antibiotic through IV. Again, Maggie didn't act sick though her temperature was just under an official fever of 101 degrees. During our visit, Maggie was again cultured. During this time, she tried very hard to "help" out. She wanted to grab every vile, syringe, alcohol prep pad and put them in her mouth. She is becoming quite the involved patient, which is very different then a couple of months ago. When we first began this process, Maggie would scream at anyone, including Andy and me, when her broviac lumens were accessed to give medicine. It shows the comfort level she has for others and perhaps the "normalcy" of the situation that we are in.

Regardless, the plan for the week is to get antibiotics tomorrow through home care and go back into the clinic early Wednesday morning to check her counts. If Maggie's counts are at the appropriate number (her platelets are great now, but her ANC has dropped to 410, which means we are no longer allowed to be in public places), her cultures are negative, AND she doesn't have any more fevers, we will be admitted to continue her chemotherapy treatments.

Please pray for Maggie that her fevers will go away, her cultures will show that she doesn't have an infection, her mouth sores will continue to heal, and she will continue to be the happy, babbling baby that she's been the last day or two.

Chemo Postponed- Home for now

We were discharged from the hospital a couple of hours ago. On Thursday when we went to the clinic, we were expecting to start chemotherapy again, but instead were surprised to be admitted for mouth sores. Of course, I knew Maggie had mouth sores, but they were not bothering her, they only looked bad (a bloody mess). The doctors continually assumed she was in pain and wanted to give her pain meds or magic mouthwash (it numbs the mouth). Throughout the last couple of days though, Maggie has not appeared to be in any pain and has been smiling and playing. So, finally the doctors listened to us (or I'd like to think they did) and allowed us to go home and wait it out because her counts are not high enough to start chemo. Maggie's platelets are below the necessary number in order to begin. We will be going into the clinic on Monday to check them and possibly give her a transfusion of platelets.

I have mixed emotions about our being home. I am glad that the doctors are taking every precaution necessary for Maggie, but I feel that our last 3 days in the hospital were unneeded. Maggie has been good--nursing, and like I said earlier, playing and smiling. It was frustrating being in there knowing she is feeling so good. I am glad that we are home, but I wish that we could have started our next chemotherapy treatment. We have two more in-patient treatments before we move to the next phase in which we have weekly chemotherapy treatments in the clinic. I cannot WAIT for the day we get to that next phase. I am a planner and on my calendar I have her treatments penciled in. We are now 3 days behind schedule and will most likely not begin until later next week. I would love to be finished with this phase before Thanksgiving because it would be nice to celebrate the holiday with family. We have been trapped in Dayton for about 4 months now. Andy and I are beginning to feel the effects, and I think to be able to get to the next phase of treatment would help.

Please continue to pray for Maggie, that her mouth sores will heal, her counts will recover, and she will remain in good spirits.

10/23

We're back in the hospital, but it's been an interesting day. This morning we woke Maggie up so that we could go to the Clinic and check Maggie's counts. As long as they weren't too low, we'd get admitted and start chemo. However, when we woke her her mouth was full of blood--her bottom lip was just covered with broken sores and......well, I won't describe it in too much detail, it was gruesome. It certainly got people's attention at the hospital--it helped us get back to see the doctor sooner, that's for sure. Whitney is convinced that it looks worse than it actually is. There are more sores inside her mouth--Dr. French said they look like they could be about to get alot worse, or else they're going to get better. It's hard to tell what stage they are at. Also, she has a scab on her stomach that broke open yesterday and is now another of the doctor's concerns. Her counts are starting to drop and this week's chemo will take her all the way down again--meaning slower healing of all of her sores.

Given all of this, Dr. French wanted us to be admitted, but chemo won't start yet. He started her on antibiotics to try to prevent an infection from developing on her stomach sore. And he'd like to see some progress on her mouth. So we'll wait a few days and see when we can move forward. We have 5 days of chemo ahead of us, so it's a bit intimidating to think that we might be here a while just waiting to get to the 5 day chemo.

We'll keep you all posted.

Fevers, the Finale

I write to you from the couch in our home--Maggie's fevers appear to be done, and she was discharged around 4:30 this afternoon. We are thrilled, relieved, and very excited to be away from the hospital--despite the good care that Maggie gets there.

Maggie seemed to enjoy the newness of today as well. Since her fever has been gone since sometime early yesterday, she was allowed to ride her car around the hallways of the hospital. We did that for quite a long time today. When we ask her, "do you want to ride in your car?" Her legs kick, hands clap, eyes get big...it is quite cute. She also perked up when we got to our driveway, Whitney asked: "do you want to see doggies?" She loves the neighbor's dogs, Max and Molson. "Da, Da, Da." Again, her feet kick and swing.

Maggie's mouth (on the inside) looked pretty clear of mouth sores today--her lips are another story. They have a stripe of yellow gunky sores, a couple deep cracks that are bleeding, and drool running out the corners of her mouth. So she's not 100% happy. She's worn a bib the last 24 hours or so to try to keep the dressing under her shirt dry. Her appetite continues to be affected by the condition of her mouth, too.

We'll rest and enjoy our time at home, but not for long. Thursday we're scheduled to continue chemo, and we'll stick with that schedule as long as her platelet count is high enough. So we'll be here for a day and a half, then we'll knock out another week on our treatment calander. Though we'd love to be home longer, we both agree that we want to get through this phase of treatment as quickly as we can.

Thanks to everyone for their support, prayers, and for following along. It helps us knowing that you care for us. And Maggie will be glad to see you down the road, too.

Fevers Continue, Part 2

Maggie has continued with her fevers throughout the night and into this morning. All of her cultures have come back negative so they seem to think that Maggie might have a virus. She could have caught this virus anytime within the last couple weeks, but there's no way of telling. Regardless, she is miserable when she is spiking a fever and waiting for Tylenol. And to make matters worse, she is getting mouth sores again. The last couple of days she has not breastfed much and since this is her source of calories because she doesn't eat solid foods, she hasn't taken much in. And if we want to add more issues, she is beginning to teeth, so that is not helping matters any.

Maggie is currently getting a blood transfusion, which means multiple blood pressure readings. This is causing her to be very upset with the continual "hugs" on her leg. She will most likely get a platelet transfusion today as well.

As for the future, we must be patient and wait this virus out. Please pray that her fevers will stop and that her mouth sores will not get worse or be painful. Please pray for us all during this difficult time.

Fevers Continue

Maggie is still running fevers today. Her cultures from yesterday have not yet shown any growth of bacteria so the doctor ordered several different tests. Maggie's stool is being tested, urine, she was swabbed in her nose for viral infections, and they are doing fungal cultures. They took out her urinary catheter to eliminate any other problems that it might be causing. The mystery is where these fevers are coming from. It appears that we will remain in the hospital until they either figure out what it is, rule everything out, and her fevers go away. She has had periods of feeling good and other times where she is irritable and appears to have discomfort. She was given Benedryl last night to go to sleep as we were unable to put her down in her crib without her screaming. After the Benedryl wore off (1-2 hours), she ended up sleeping in the hospital bed with both Andy and me hugging the railing. Needless to say, it was not a good night sleep. We are struggling to keep Maggie happy as we are contained to our room due to her fever (she would love to go driving in the red car). We also worry what might be causing these persistent fevers as nothing dealing with this disease ever gives much comfort. Please pray that her fevers will go away and that the cause will be found and easily treated.

Fever

Well, here we are again. Finished with Methotrexate and Maggie has spiked another fever. We are in the hospital waiting for the Methotrexate level to leave her system (and after less than 24 hours after finishing the chemo drug, it is almost completely out of her system, which is faster than usual). So, chemo won't be holding us in the hospital, but instead most likely this fever. Maggie is already on an antibiotic from the last fever, so they have started her on another one. The nurse told us that Dr. French seems to think this might be a viral infection since she was already covered on antibiotics. Whatever it is, we are getting pretty tired of it. With the last 3 chemo drugs, Maggie has spiked a fever each time. I'm becoming pretty good at predicting her fevers, which is not a good skill to have.

So, please pray for Maggie-- that the fever might clear quickly and that it might not be a bacteria again. Please pray that if it is a virus, the virus will leave her system quickly.

Prayers for the Fishers

We were reminded of the reality of this disease this morning through a post that we read on caringbridge (a website for family members and friends of persons with serious illnesses). One of the children we have been following, and have asked for prayers about, Liam Fisher, has been given sad news that the leukemia has returned to his body after a bone marrow transplant. They are stopping treatment and are expecting that he'll live for about another month. This saddens me and my heart aches for his mother and family.

I have learned in the past 3 1/2 months that we can never be comfortable. There is always the uncertainty of what the next day, or even the next hour might bring. Though we are told by others that we must remain positive and have faith and hope, it's difficult because of the nature of our situation. This past week Maggie slept 6 hours straight and during those 6 hours I thought there was something wrong with her or that she had even died. Any other parent would see this as normal (because most parents with children at this age are sleeping through the night). We on the other hand have to think what might be the cause for this change--is it her infection, is her hemoglobin low? We live with worry that at the blink of an eye Maggie's situation can change, just like it has for so many other families. It's hard to explain the situation and our perspective. Of course there are lots of kids who get into remission and never have the leukemia return. Our perspective will probably change from week to week and hopefully our comfort level will creep up a little bit. But it's hard to ignore the negative side of the statistics, especially when we hear of little ones who don't make it.

Our thoughts and prayers are with Liam and his family in South Carolina.

On Schedule

We returned back to the hospital this morning around 9:00 for a scheduled chemotherapy of Methotrexate. It took Maggie's urine ph (she has to have a certain level before they can begin this type of chemo) some time before it was at the right level to begin. But she was underway around 4:30 or so. She'll receive the chemo for 24 hours, just like last week. If all goes well, we may be home by Sunday. We won't take that for granted though--hopefully Maggie won't get any infections this time. As for the last infection, she appears to have it knocked out as the blood cultures from Monday and Tuesday are still clean.

Maggie's mood has been up and down today. At times we have wondered if she is in some discomfort or minor pain of some kind--she arches her back and screams every once in a while. It could be her catheter irritating her, or maybe she has some teething pain. Who knows? Other times she acts just fine. She seems especially close with her nurse tonight--jabbering away, smiling, and waving as soon as she walks in the room.

Our time here today has felt too familiar--it's not where we want to be right now. Especially because Maggie requires constant attention from Whitney. They've spent the whole day in bed together--eating, resting, playing, eating, resting, eating....and Whitney does work from the computer during every break. These are long days for Whitney. We are happy though that Maggie is doing well. We can't take that for granted. And the purpose for our hospital stay is a good one--she's getting medicine to help make sure that her cancer doesn't come back. So we can be content for now. Tomorrow is a new day, hopefully another good one for Maggie.

Updates on the Infection

I called the clinic yesterday, 48 hours after the first culture was done due to Maggie's fever. They found that the bacteria she has is called enterobacter aerogenes. Though this means nothing for probably most of you, for us it means that it is a different bacteria than her last fever (which means that bacteria hasn't lingered in her broviac the last several weeks, or at least I don't think it has). The other thing that it means is the antibiotic that she is currently taking, Rocephin, is compatible in getting rid of the bug. And I think this is proof by the fact that the nurse called this morning and told us that the cultures that were taken on Monday, still have not grown anything. This is great news. This means that the bug might be on its way out if not already out of Maggie's body and it also means that if it continues to remain negative, Maggie will stay on course for her next round of chemotherapy and will go in tomorrow morning for another 4 day treatment of Methotrexate.

There has been evidence in several occasions today that I have witnessed God working. Maggie is doing so well despite her infection, and it appears that the infection is gone or nearly gone (and her broviac may be saved). My home church family has received wonderful news of answered prayer. When experiences like these occur, you can't help but shout out a Praise God or Halleluja. It's instances like these that help us to see that God is still very present in our world.

Clinic visit

We went to the clinic this afternoon because Maggie's cultures are showing she has gram negative rods in her blood. It is too early to determine if this is the same infection as her last fever several weeks ago, but it seems very possible. They did another culture to see if the infection is still in her blood this afternoon. She fevered at 3:00 pm yesterday and hasn't had one since, which is a good thing. She is currently on antibiotics. The real fear here is that her broviac might have to be replaced. They won't decide this until they know what type of gram negative bacteria it is and whether it can be fought with antibiotics. Anytime there is a fever, it is a very serious matter. Another culture is going to be done tomorrow by home care to again determine if the bacteria is still in her system. She cannot start chemo until she is cleared of the infection in her blood (she is to start Methotrexate again on Thursday).

We had a discussion with Dr. French, who we admire as a doctor more and more everyday, about the possibility of losing her broviac. Maggie has about 4-5 more weeks of heavy chemotherapy treatment. Once she completes this, she will be in the Maintenance phase of treatment. It is at this phase that the possibility of a port could be used for the rest of Maggie's treatment. A port is under the skin and is accessed with a needle, but it only has one line for entry of medications. Her current broviac has 2 entries which allow for two medicines to be infused at the same time. A broviac also doesn't require any sort of needles, pricks, etc. The advantages to a port are that they are less likely to become infected, she is allowed to be immersed in water, no need for dressings, and it requires less maintenance. It does require a needle poke every time you access it and to draw blood Maggie would have to have her finger pricked. There is a high possibility of Maggie getting a port in the future, the only problem is, it really should wait for about 5 or more weeks. So, this is where things get tricky because if Maggie loses her broviac, the timing is not as good. We don't want her to have to go through surgery more than necessary.

So, at this time please pray that Maggie doesn't need to have her broviac replace. Pray that the infection can be taken care of with antibiotics and that it is not the same type of gram negative as before. Pray that she continues to feel well, even though she has this infection. And pray that we might remain on schedule for chemotherapy, or close to it.

Surprise Discharge

This morning Maggie spiked a fever. Maggie awoke at 2:30 to feed and as she lay in bed with us (we all shared the hospital bed and I got the railing) I could tell she was fevering. I waited anxiously and prayed that it would break before they did vitals at 4:00. At 4:30, sure enough when they did vitals, it was 101 degrees. Immediately my mind thought another 48 hours at least and the risk of losing Maggie's broviac to infection. We were expected to leave today as Maggie's Methotrexate level would most likely be within the correct range. So, after a very long morning awake (from about 4-6), we all ended up sleeping until 10:00. Maggie was so tired (as were we) that as nurses and doctors came in and out she would cry, but go right back to sleep.

Dr. Dole came in late this morning and surprised us with wonderful news. We would be discharged though Maggie has a fever. They cultured her at 5:00am and started her on antibiotics. Because her counts have recovered and are good (her ANC is at 3700) they said that she can go home on antibiotics and if she fevers to give her Tylenol. If her fevers continue, we will go to the clinic on Tuesday. Maggie is scheduled to come back in for chemo on Thursday again.

We are so happy to be going home as it is such a beautiful day and week ahead. Please pray that Maggie's cultures come back that she doesn't have an infection. Pray that we will not have to have her broviac replaced and pray that the fevers end and Maggie continues to be in good spirits.

Fever. Stuck in hospital. Tired.

Post-Birthday Reflections

We have arrived back into the hospital for more chemo (Methotrexate and a spinal). Maggie has done pretty well today, thankfully. She napped in the hospital crib (the last 2 visits she has been sleeping in the regular hospital bed either by herself or with me), she's eaten baby cereal with whole milk, and read some books. Maggie took her last steroid today and so we will be getting our "happy Maggie" back soon. Dr. French came in after her spinal this morning to also let us know that it looked clear of cancer cells. So everything is going well.

We celebrated Maggie's birthday yesterday with my parents, sister and brother-in-law, and shared birthday cake with the nurses at the hospital. It was a fairly quiet day and Maggie was in a better mood than on Sunday. As I sit and type this, every now and again I hear Maggie talking (da-da is her way of communicating). I peaked around the curtain and saw her talking to a baby doll that she got for her birthday (thank you, Heather!). It's the cutest thing to listen to her.

Last night, as I lay feeding Maggie to sleep, I couldn't help but think about the first year of her life and the few days leading up to her birth. We knew when Maggie was going to be born because I elected to have a c-section due to her estimated large weight (she ended up being 10 pounds). I was so nervous about having her, the responsibility that lay before us, the surgery, the anticipation of a baby. It was all life-changing. Maggie's birth was life-changing. As I think about the situation we are in now with Maggie having cancer, I also think of the word life-changing. It's so funny how two completely different events can have the same description-- life-changing. With all that we have been through these last 3 months, sometimes I have wondered if we could do it all over again, knowing that at age 8 1/2 months Maggie would be diagnosed with cancer, would we? As she lay beside me last night, nursing/sleeping peacefully, I immediately thought yes, without a doubt. Throughout this last year, I believe Andy and I have experienced every emotion possible. As new parents and a new human on earth, we have all been put to the most extreme test. I pray that we might all pass this test and be together to share about it.

We celebrated Maggie's birth on Sunday and on her actually day of birth yesterday. However, I think in our mindset, every day of her life, regardless of cancer, should and will be celebrated. She is a beautiful child of God and we plan to show all the world what God can do through the miracle of healing and life. Thank you God for giving us this miracle, Maggie. She is the best gift you've ever given to us. Might I selfishly ask that she stay here on earth with us for our remaining days?

Thank you all for your birthday wishes. I know that Maggie will appreciate them all when she is older. Thank you for continuing to follow us through this journey of healing and for your prayers and support. We would not be able to do it without you all.

She refused to touch her cake. Andy was looking forward to Maggie "digging" in. I guess she doesn't like to be dirty.

These are pictures from her party on Sunday. The bottom picture was the one rare moment that Maggie actually smiled.

Update

Sorry it has been so long. Usually, our long breaks between posts are due to our being home, eating out, visiting with family and friends, and enjoying a more "normal" lifestyle. That's been true, to a degree. We are also a bit tired, worn, and dealing with the "steroid" blues hasn't helped. However, we have been celebrating all the while as Maggie's birthday is Wednesday, Oct. 8. (I'm writing this Tuesday night). Sunday we had some family and friends to Dayton for a party. We had a nice time, though all who were there would attest that Maggie was not happy. She was very cranky the whole time and let us all know what she thinks of being on steroids. Still, it is such a wonderful blessing to celebrate her birthday. I have told several that when we were waiting for the official diagnosis in late June--I was very afraid that Maggie wouldn't reach her first birthday. I don't know if Whitney ever contemplated that or not. But, there was no guarantee that she'd recover as she has, and, in order to preserve our sanity we avoided reading about different cancers, survival rates, etc. It was too much for us at that time. We had no idea if it was cancer for sure, and if it was, we didn't know what her chances would be.

So, it is quite amazing to celebrate Maggie's first year. I know that I can't reflect on it very clearly right now. Her party felt different to me than any other birthday that I've celebrated. It was less about having a chance to eat cake, give gifts, and give simple recognition to someone. This felt like a real accomplishment and a real cause for celebration. Further, we were able to celebrate knowing that Maggie is doing very, very well so far. At least as well as we could hope. So that made it so much better. It was great to see those who made it and we appreciate all of them helping us celebrate. Maggie got spoiled a bit, too--lots of new toys to try out. Thanks to all.

We hope to have one more birthday bash Wednesday evening at the hospital--this is something that Whitney and I felt very strongly about. Our nurses, aides, doctors, and everyone else at Children's Medical Center in Dayton have become a family to us. We are proud of Maggie and want to share the excitement with them. Plus, we know how much people have grown to love Maggie.
Maggie has been on Steroids (dexamethazone, or decadron) for about 6 days now. We finish up Thursday morning. Maggie has been more affected by the steroid this time than in previous times. She is often fussy, whining consistently--and she doesn't smile as often. That has been tough. We'll also be in the clinic in the morning to get blood counts checked in anticipation of another round of chemo in the hospital Thursday. We should be in the hospital for a number of days but hopefully will be home by the end of the weekend.

As a family, we are experiencing significant highs and lows. We're trying to keep our morale intact, relationships strong, patience steady, and meet requirements of our work and careers. It is a busy time. Things should improve when the steroid treatment ends and especially when we can cross off another week of treatment from our calendar. Good days should be ahead of us.

Blessings to you all.

Waving Maggie

Here is a video clip of Maggie waving this evening. Our neighbor, Emily, is letting Maggie borrow this car to help motivate her to walk (we're still working on crawling). You'll notice Maggie isn't wearing any pants. We gave up on pants as Maggie had 3 blowouts today. Diapers just aren't doing their job...

Doing well

We continue to be at home and enjoying every moment of it. Andy took Maggie to the clinic on Monday to find that her counts have pretty much bottomed out. Her ANC (ability to fight infection) was at 70 (if it's under 500 she is not allowed to be inside with crowds). Her white count was 600 (average is 5,000-10,000). I am hoping that she is now rebounding as we are confined to our house or outdoors. Thankfully it has still been fairly warm outside so that we can take her out to entertain her.

We bought Maggie a red car, just like the one in the hospital, last week. She has loved driving in it. We actually drove her to the grocery store down the street and she sat in it the entire time and waved occasionally (most of the time to nobody in sight). She has been waving for a couple of weeks now and it is so cute.

Maggie goes into the hospital tomorrow for an outpatient spinal tap of chemotherapy and another chemo drug, Vincristine. She received Vincristine last week as well and it caused hoarseness. Maggie also begins steroids again tomorrrow. She will have one more week of them and then will get a break (thank goodness). She has been such a joy at home--smiling, laughing, napping (yeah!), and she is beginning to sleep in her bed at night for periods of 2-3 hours at a time. It has been so nice to be able to sleep for a couple of hours before feeding her. Basically since her diagnosis, she has been getting up about every hour to nurse. Needless to say, this has been a bit tiresome for all.

Thank you all for your continued prayers and support. We pray that Maggie will continue to respond well to her treatments--that she will not get any infections or mouth sores. We pray that our only hospital visits will be those for scheduled chemotherapy.

Enjoying home

Maggie was discharged from the hospital on Friday and has enjoyed a couple of good days at home. She had a bit of a low grade fever the first part of the weekend, but never high enough to get too concerned. We have an appointment with the doctor Monday afternoon to find out where her counts are, among other things. It will be interesting to see how quickly they recover as they dropped very rapidly over the last week. Otherwise, her infection still seems to be gone (as far as we know) and she will hopefully be on track for more chemo later in the week (scheduled for Thursday, but her counts might need to be recovered first).

Thanks for following Maggie's progress--and thanks for your concern and prayers.

Making progress

Hi everyone,

Maggie is doing pretty well, and we are happy. Her infection has been identified and the antibiotic that she was on initially is a good match. She hasn't had a fever in 50 hours or so. That is great news! They have talked about keeping an eye on her here in the hospital until tomorrow or Saturday--they don't want to send us away before they know that the bug is taken care of. Our understanding is that this infection can be dangerous if it isn't treated, but it is well under control. It seems the only question now is whether it will stay clear in her broviac. But on the infection front, it is so far, so good.

Maggie still hasn't felt good for the last few days. Lots of straight faces, scowls, and angry steroid screams. She did have her chemo treatment that was scheduled for today, so that is good too. Also, she had a blood transfusion today, and will receive a platelet transfusion tomorrow. Over the last 3 days, her counts have dropped in half each day. So they are on their way down, we'll see how far down they go.

As I type this, Maggie is talking, smiling and giggling while playing with Whitney, so we're thrilled to see that. It has been a rough week. Hopefully she's on her way back to her normal self.

Waiting Game

Maggie has gotten a few fevers since Monday, most recently at 6 this evening. Her blood cultures from Monday's initial fever are growing a gram negative bacteria, so she has an infection. What does this mean? Well, it is again possible that her broviac (central IV) might need to be removed if they can't clear the infection from the tubing. Hopefully we'll hear tomorrow that they have a good antibiotic for her bug and that she's on her way to getting better.

For clarification sake--when she gets a fever, there is a standard protocol that they follow. First, they draw blood and send it to the lab to watch it "grow." At the same time, they mix some of the blood with different antibiotics to see which one(s) work the best to kill the infection. They also give her Tylenol to reduce the fever, and start her on an antibiotic that is good for a broad range of infections. Hopefully this helps get rid of the infection until they know more specifically what the infection is. However, it takes several days for this process to take place. They usually draw blood again 24 hours after the initial bloodwork and repeat the "culture" process to check to see if the infection is still there and if it is weakened. In a couple days, they then know more about the infection, sometimes they change the antibiotic to a better one, and hopefully it is just a short time before it is all gone.

Though we know little about the types of infections, they classify them into gram positive or gram negative bacteria. You can google those terms to learn more detail if you want. Typically, gram negative bacteria come from the intestines or from contact with stool.

Maggie's bug then, either is from her IV tubing coming into contact with her diaper area (not likely because Maggie was constipated the last few days from her chemo). The other way that she can get a gram negative bug is kind of a side effect of the chemo, if I understand it correctly. The chemo attacks cells that rapidly divide (to kill off cancer cells), but also tend to affect other cells that rapidly divide: hair cells(that's why it falls out), skin, and the lining of your mouth (hence Maggie's mouth sores), throat, stomach, and the rest of the GI tract. So, the lining of your stomach or intestines, which contain lots of bacteria naturally, gets broken down and the bacteria can seep into the bloodstream. Then, in a matter of time, fevers begin. That's my amateur understanding, probably filled with errors.

Our hope is that Maggie's bug is identified soon and more importantly, it clears soon and doesn't cause any more problems. Some bugs are easier to treat than others, so we'll hope for good news in the morning or whenever the situation becomes clear. That's the "wait" that I referred to in the title. We know that she's sick, we watch her feel yucky, cultures are drawn, we wait........we get a little more info, then we wait............and hope, and hopefully we don't worry too much in the meantime. Thankfully her counts are still high enough that they should help fight the infection for a couple more days before they are depleted by the chemo.

Please pray for good reports from the doctors, that her infection clears, that her broviac doesn't need to be removed, and that chemo continues as scheduled later this week. It is ironic to know that we received great news of Maggie's remission just days ago, yet we still have to be wary of the other risks to her treatment and health. The chemotherapy continues for another 20 or so months to make sure that the cancer cells are totally gone. Along with the chemo is the weakening of her immune system and the risk of infections. It is clear that we never get to fully relax. And the waiting is so hard.

Not so fast...

So, Maggie hasn't been feeling real well all weekend--Whitney and I have agreed that this combination of chemo drugs (4 drugs, 8 total doses plus the chemo that they insert into her spinal fluid) over 4 days has been the most potent for Maggie. Last time we had these (the week of Maggie's diagnosis) she had mouth sores that cost us 2 1/2 weeks in the hospital and a lot of morphine.

This morning, after a night which Maggie moaned through at times, her temperature was in the mid 99 range. She wasn't smiling. We had been expecting to be discharged early today but we were worried that she wasn't herself. Her temperature kept creeping up to 100.8 or so by early afternoon, close enough to an official fever (the hospital considers a temp of 38.3 C, or 101 F to be a fever). So they drew blood cultures, started her on antibiotics and we are here, it would seem, for another couple days. She threw up a couple of times, has slept quite a bit, and has continued to cling to Whitney. So we are frustrated to be here still, but comfortable knowing that we won't have to go home only to rush back in the middle of the night as we've done before.

This weekend brought reminders of how strong our family is. It would amaze you if you saw the nurses come into the room to give Maggie her chemo. They wear a mask, eye goggles, gloves, and a big blue plastic robe anytime they handle the chemo. It's too toxic to be casual, after all. Kind of suggests how serious these drugs are. Of course they go into Maggie's body with the task of killing cells. She gets no goggles or gloves, that is for sure. I'm still affected by that sight every time. Maggie is so very strong and resilient. I'm extremely proud of her.

And Whitney's amazing, too. Hour after hour she is at Maggie's side. When Maggie doesn't feel well, or is uncomfortable with all of the medical personnel or her surroundings, she clings to her mother. I can't imagine a more loyal and loving display than what Whitney does on a daily basis. Of course any free moment that she has during the day is spent working, either from here or away. It's not uncommon to see Maggie clinging to Whitney taking a nap, and Whitney is typing away, reading to prepare for her teaching, or making a phone call. She never gets to let up.

Anyways, these ladies are amazing. More later.

Continued Chemotherapy

The last couple of days have been a bit trying on Maggie (and on her parents). Maggie began steroids on Thursday and I am pretty sure they have kicked in. She has been quite fussy--nothing seems to entertain or please her. I think the chemo she has gotten the last couple of days have caused her to be needy as well as, we have spent most of the past 2 days nursing in bed. I have become her human pacifier. She just doesn't quite seem herself and it is evident in her behavior and neediness for Mommy. We have been able to take her off of IV fluids for awhile each day so that she might drive her red car around the hospital grounds. This seems to excite her as she will sit in her car with one arm perched on her back rest and the other on the wheel. She's already practicing the "cool" pose of driving around in a convertible. We look to go home tomorrow morning (probably after late morning rounds). The plan is to then come back to the clinic on Friday for another outpatient dose of chemo and blood counts. We pray that Maggie doesn't get any mouth sores (as last time she had this combination of chemo we were back in the hospital 6 days after discharge). We also pray that Maggie will stay infection free as this chemotherapy will knock her counts down to zero. Thank you all for your continued prayers.

Comfort & Joy

I must confess to each of you that as I added to Maggie's blog yesterday about her being in remission, my heart was not as joyful as it should have been. When Dr. French came in yesterday to let us know that Maggie was in remission and that her marrow showed less than 1% blast cells, I was not put to ease. Me, being a perfectionist, wanted to hear that there were no blasts or as I understood blasts being leukemic blast cells. I spent all night wondering and worrying about why there might be some blasts still showing in her marrow if after her first week of treatment she had 0% blasts. So, while I should have been rejoicing to hear the wonderful news of remission, I was stuck on the percentage of blast cells still in her body.

When Dr. French made his rounds this morning, I made sure to ask him the questions that circulated in my head all night. When he entered, I immediately told him I had a couple of questions. He bantered ever so briefly about the word "couple" (I think we are getting the reputation of asking a lot of questions and if any of you know our doctor, he is one that is not normally the bantering type so this was a pleasant surprise as well). Anyways, I shared with him my concerns about the 1% leukemic blast cells shown in her marrow. He immediately stopped me and reiterated that to be in remission the marrow should have less than 5% blast cells and Maggie had less than 1%--meaning hardly detectable (and he also shared that depending on who is reading the slide, others might consider it to be 0%). He also explained to me that blast cells do not necessarily mean leukemic cells. Throughout this experience, whenever I hear the word blasts, I immediately thought leukemia because Maggie's marrow was filled with 80% leukemic blasts when first tested. The word blast means immature cells that eventually become mature cells in the body as long as they are not compromised by leukemia.

Though I might not be in full understanding of the process of cell division and birth (and though I might only be confusing others), what I want to share with you all during this post is that I feel more at ease and joyful that my baby is now in remission. I should have felt all the joy in the world yesterday, but I have had my guard up for so long that it requires continual reassurance that everything is going to work out, and Dr. French provided some of that. I have also been reading many different stories of children plagued with cancer and relapsing or having complications. It scares me more than anything to know that this is always a high possibility. I ache for every mother out there pleading with God not to take their baby, as I am also one of them. When you give birth to a child, you don't ever expect to go through something like this. I continue to ask Andy if there is anything worse than what we are going through, and though I am sure there is, we haven't come up with anything.

I appreciate you all listening to my thoughts. Normally I don't want to use Maggie's site to share things like this because I view this site as Maggie's--sharing what she is going through and not what we, as her parents are experiencing. I wanted you all to know that I do thank God for the news of remission because I don't think the post from yesterday demonstrated this. Though I still wrestle with God with questions of "why us" and sometimes grow angry at what Maggie is going through, I am slowly coming to grips with our new life. As I have shared with Andy before, if I knew that the end result would be a cured Maggie, I would be able to go through this experience with less negativity, worry, etc.. But of course, that is not the way life is.

So, (yes Whitney, get to the point of what you are trying to say)-- Yes, Praise the Lord for this first step in the miracle of healing Maggie. Praise Him for getting her through these last 2 1/2 months with little problems. And Praise Him for what He will continue to do throughout treatment and in the many, many years ahead. I KNOW He has wonderful plans for Maggie and I KNOW that they do not include premature death. Maggie is an amazing baby and is going to be an amazing woman, doing wonderful things in her lifetime for the glory of the Lord. I hope each of you will stick around after this little detour is finished and observe the miracle that she is. After all, you are all a part of her life now and we feel comfort in knowing that you are all with us each step of the way. Thank you all for keeping us in your thoughts and prayers. We would not be able to do this without knowing that we have a support system circling the earth and that prayers are continually being lifted up in Maggie's behalf.

Remission

(This picture was taken while Maggie experimented with spaghetti.)

Maggie is officially in REMISSION! Dr. French came in moments ago to let us know that her bone marrow showed that she has less than 1% leukemic blasts in her body. The definition of remission is that her counts have recovered and that the bone marrow shows less than 5% leukemic blasts. Now of course the goal is to keep Maggie in remission. Dr. French said yesterday that they will not do another bone marrow aspirate until the end of treatment (unless something abnormal shows up in her blood tests or other abnormal signs).

With the bone marrow aspirate yesterday, Maggie underwent a spinal with chemo, and two different chemo drugs (daunorubicin, vincristine). She tolerated these fairly well, with the exception of some pain off and on throughout the day and evening. With her being a baby, we continue to struggle to determine where the pain is originating.

Today Maggie has received more chemo and an IVIG transfusion (antibodies to help her immune system). She and Andy are napping right now. I worked this morning which caused some distress for both of them as Maggie doesn't like to take bottles and holds out until I return.

We have seen some of the effects of the chemo drugs used this time. Her eyes are reddened and we have to work on getting smiles out of her. Thankfully she has not shown signs of nausea thus far. We have two more days of chemo- Cytoxan and the rescue drug Mesna. We will most likely be discharged on Monday.

Pray that Maggie will not feel the effects of chemo, that she will not get mouth sores or any infections. Also pray that Maggie will stay in remission for the rest of her long life. Thank you all for your continued prayers and support. We feel very loved by those we know and those we know only through this technology.

We're still here

I have had several contact us wondering what is going on in our life-how Maggie is doing. We are here. Hurricane Ike affected us a bit. It came in on Sunday with 60-70 mph winds. In its frenzy, it pulled one of our trees right out of the ground. Thankfully it just grazed our house, taking with it the gutter and our satelite/telephone wires. We were then without power from around 3:00 pm on Sunday until this morning around 10:00 am. With this we didn't have internet access and if it wasn't for a friend, we would have a freezer full of spoiled meat.

We visited the clinic on Monday to find out that we are scheduled to go to the hospital tomorrow for a bone marrow aspiration, spinal with chemo, and start our next round of inpatient chemotherapy. This next round is similar to the first chemotherapy Maggie had when she was diagnosed. It will consist of 3 different chemo drugs spaced in a 4 day period. These drugs will again wipe out her counts. The last set of drugs did the same, but surprising to us, she rebounded very quickly.

The other major step in this treatment plan is that with the bone marrow aspiration, we will find whether Maggie is in remission or not. The doctor's assume that she will be there (as 90-95% of children are in remission after the first round of chemo), and for that reason, they are continuing with the treatment protocol before even getting results. The protocol consists of the entire treatment that Maggie has (endured) thus far, all over again, with some minor adjustments. Though I was saddened to see that Maggie will be on steroids for 21 days again, I can't imagine that our experiences this time around will be similar to the last time. We were in the hospital for 2 1/2 weeks the first round of treatment with mouth sores and then broviac issues. I hope and pray that this time around we will not have any hiccups and we will stay on course with no breaks.

So, plan to hear from us sometime soon with wonderful news that Maggie is in remission. We pray that each of you have weathered the storm that you might have faced with hurricane Ike, or storms within your own life. Thank you all for your continued prayers for Maggie and ongoing support.