August 4 Update

Our day today was in many ways similar to yesterday. Try to manage on little sleep. Treat Maggie's fever periodically. Get excited about cell growth.

Of course there is more to it than that. Maggie's blood cultures from her initial fever (Saturday night) are still negative. So, there is nothing growing (bacteria), which is good. We'll get final word in the next few days, but it seems that we are still looking at a virus. She was up in the mid 101's today when her tylenol wore off. If it is a virus, we just have to wait until it runs its course. Her fever is responding to Tylenol just fine in the meantime. No big deal there, for now.

Maggie's ANC grew to 250 from 40 yesterday. That is what we've been waiting for. It needs to get to 500, and may do so as soon as tomorrow morning. Her White Blood Count is 4200, up from 2000 yesterday. Again, 6,000 to 14,000 is normal if I recall correctly. It just took Maggie a while to recover fully from the bone marrow damage that the leukemia and chemo inflicted. But the doctors doubled her Neupogen (a drug that instigates WBC growth) in the last few days and that seems to have jump-started her growth. We're still looking at starting chemo later this week, maybe getting a short 48 hour rest at home before coming back.

We got a scare today, though. Among the cells that are recovering are blast cells, at 11%. These are young, immature blood cells that turn in to different types of blood cells as they mature. However, in ALL, the leukemia cells are also blast cells. So, they did a test to see if the blast cells that they found were normal, or Leukemia. There was some concern because the doctor wasn't expecting to see as many of them as they found today (they don't usually want to see anything over 5%). We got a visit from Dr. Broxson and he said that they were waiting for results. When we asked if we should be concerned, he paused and said: "a little bit concerned, but not a lot." Easier said than done. He peeked in shortly thereafter and said that they were, in fact, normal blast cells. There was some confusion from that point forward--though they were normal blast cells, there was some mention of what they were doing in response to the high %. If they are normal, why are they still trying to manage/monitor those cells? We have been trying to find some peace of mind about this, but it all happened too late in the day to be able to talk to the doctor at length. But so far, so good.

If nothing else, it was a shock to us and our expectations. Since the genetic testing we have been comforted in knowing that relapses are supposed to be somewhat infrequent, especially this early. At one point, the doctors told us that if they stopped treatment right now it might take 3-4 months for the leukemia to come back. So, our concern has been focused on infection risk, not relapse risk. Of course if there is a relapse this early in treatment, that is worse than a later relapse. We want to see the chemo treatments working at this early stage to prevent having to discuss alternate treatments that are riskier. Even though we have been assured that things are fine right now, this was a reminder of how fragile we are when frightening or bad news is delivered. Our hearts stop beating. We worry about the worst. And we question whether or not we are being too optimistic through all of this. It is hard to explain that though many are so encouraged by the good signs so far, we still have to sit with the unknown and the reality of Maggie fighting such a horrible disease. The worry is so intense when we have to wait for crucial news or when it seems that something is going differently than expected. We are learning on the fly and anything "unexpected" or "unusual" causes great panic. The more we learn as time passes--the better we will be able to understand what is going on. But so far, we don't have a sense of what is normal, what isn't, which doctor is naturally optimistic, which is more cautious, etc.

Though this entry is getting long--I want to mention two patients on the floor tonight. One was a teenage girl with long brown hair being wheeled down our hallway this afternoon (by the same nurse who first escorted us to our room when we were first diagnosed). The look on her face as well as that of her family members trailing behind her was so hard to witness. The first day of the fear of a new, unthinkable cancer diagnosis (or it could be a non-cancerous blood disorder, I guess--they are treated here too). It breaks your heart to see more families going through this. We know so little about what is going on with her, but it seems so familiar to us, just by glancing at them for a split-second.

Secondly, we were asking questions to one of the oncology nurses about why Maggie has had so many nurses from other floors lately. The answer is twofold: a) there are a lot of patients here now, b) Maggie is stable and doing better than most (or all) of them at this stage of treatment. When there are chemo treatments being given or serious complications, the experienced nurses are assigned. In our case, we are just waiting and treating a minor fever--so the extra nurses who are helping out get assigned to us. Anyways, as a part of this explanation, we were told that several kids are quite sick right now. One of whom has a fever of 106. Wow.

We appreciate your thoughts and continued prayers for Maggie. In addition--we are remembering those who are down the hall from us, families and children at different stages of their lives with cancer. And, those in other states who are in similar situations (some of whom we have read about and been in touch with).

Thanks for your prayers and goodnight.
Andy

Bad and Good Reports

Maggie took 2 hours after her Ativan to fall asleep last night, and it took a dose of Benadryl to seal the deal. It was after midnight before she fell asleep. At 3:45 we got news (as she woke up) that her temperature was 102. They gave her Tylenol and it subsided until about 1 or so this afternoon--it returned to over 101. She's not very comfortable unless she is nursing, but she just received her second dose of Tylenol. The doctors think that it is probably a virus as she is still on a wide range of antibiotics from her last fever. Her vulnerability to bugs is ultra-sensitive, to say the least. Hopefully it will go away soon and the blood cultures that they took will be clean of bacterial infection.

On the plus side, her white blood count (WBC) quadrupled since yesterday morning. Her WBC is at 2,000 vs. 500 yesterday. It still needs to get to between 6,000 and 14,000 to reach a normal range. Next her ANC (currently at 40) will need to jump to at least 500. Since she had such a good day of WBC growth, the rest of her cell growth will hopefully accelerate now. As such, the doctor is ready to think about starting chemo again in the next few days. Or, we might get to go home for a quick break before returning later in the week to start her chemo again. Today marks the 2 week mark of our current hospital stay. 18 of the last 19 days have been spent in our comfy room here on the fourth floor of Dayton Children's Medical Center.

Ativan?

Ativan is supposed to be calming and put our little one to sleep. It appears to have the opposite effect tonight.

A good day

We had a good day today, beginning with a good night sleep. They gave her Ativan last night around 11:00pm and Maggie slept through the night until 8:30am. Ah, it was so wonderful. Maggie had her times today where she moaned & whined, but other than that she was, for the most part in good spirits. The IV therapists did a dressing change on her broviac area and they said it looked good. We hope this continues to be the case for the next 2 years. We spent about an hour and a half outside today. The weather was perfect--sunny and a slight breeze. Maggie really enjoyed it- reading books, sucking on things, and playing in the grass. We hope to be able to do this daily now that she is feeling better. She has always enjoyed being outside. At home when we were unable to soothe her, we would take her outside and she would immediately calm down. Andy's parents were here to help keep her entertained as well.

As I type this we are trying to get Maggie to sleep. The Ativan that worked so well last night is not appearing to be as successful tonight. I will post a video that I just took of her on the anti-anxiety and often sleepy drug. We are getting our old Maggie back--difficult to put to sleep and one who doesn't need much sleep to function well.

Now that Maggie is showing signs of better health and we appear to be past our "hiccups," we wait for her counts to recover so that we might start chemotherapy. Pray that she might continue to feel better, stay free from illness, and that her counts might recover. Thank you all for your continued prayers, and I hope you enjoyed the weather today as much as we did.

Maggie updates you personally...

Sometimes Maggie prefers to add the blog entries herself.

She's starting to feel a little bit better after surgery.

Post Surgery

Maggie is out of surgery and is sleeping in her bed. The surgeon said that "it went perfectly." They used a different brand broviac that is a size larger. It is to be more durable and he (and the nurses) like this type better. He told Andy after the surgery that he plans not to see us until Maggie is finished with treatment and needs it removed. We pray that is the case.

We had quite a rough night again--no mishaps, only Maggie not wanting to sleep. We might have gotten an hour if we were lucky. We talked with the doctor and he thought perhaps it could have been withdrawal from morphine. Whatever it was, it was torture for all of us. She didn't scream & cry as if she was in pain, instead she whined, wanted to nurse all night, and when we put her in bed she called out for us and couldn't put herself to sleep. The doctor prescribed Ativan if we have difficulty tonight. He said that if by 9-9:30 Maggie isn't showing any signs of sleep, to give her some and it'll put her to sleep for 6 hours. My thoughts were, "where was that drug last night?" Either way, hopefully that will help us as it has almost been a week since we've gotten more than 3 hours of sleep in a night.

Our next steps are now waiting for Maggie's counts to come up so that we might start chemotherapy. Her ANC is at 50. It needs to get to 500 before they will begin. Hopefully it might take the upswing here soon so that we can move on with treatment and get out of the hospital.

We thank you all for your continued prayers. We have heard from so many that you are praying for Maggie. We know that this last week has been very tough, but we only expect it to get better now. Thank you again and hopefully we all have a peaceful night.

Surgery

Maggie's on the schedule for 1:45 tomorrow (Friday). Though we continue to be unsure about why we've had such trouble with her previous IVs, we're scheduled with a different surgeon (ironically his name is Dr. Christian). Try something new, right? So--please remember Maggie in your prayers--that the procedure would be successful, that Maggie's recovery from anasthesia would be painless (and without nausea). Of course our biggest hope is that this IV (Broviac) would serve its purpose until Maggie is done with treatment, 23+ months from now.