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.