Wednesday, November 26, 2008

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.

Tuesday, November 25, 2008

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.

Friday, November 21, 2008

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.

Wednesday, November 19, 2008

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.

Sunday, November 16, 2008

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.

Saturday, November 15, 2008

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.

Wednesday, November 12, 2008

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.

Friday, November 7, 2008

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.

Wednesday, November 5, 2008

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!

Tuesday, November 4, 2008

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.

Sunday, November 2, 2008

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.