Up and Down

We continue to face challenges every day. Many of them are struggles with morale, patience, and time management.  We have been getting lots of help from our families though, which is nice and much appreciated. A sampling of what we're enduring:

1. Maggie still is not sleeping well. We've tried everything. We have been told by one of the doctors is that we'll have to let Maggie cry it out so that she can again learn to soothe herself and put herself back to sleep. We'll consider that, but last night's try resulted in Maggie pooping her pants and throwing up from screaming so hard. FYI, we know that many readers have had good success with cry it out, or with any number of other approaches. However, Maggie's circumstances are pretty unique, so your success stories probably won't help us. Two weeks of every month, Maggie has steroids in her system and they don't allow her to sleep. Further, they disrupt any cycle of sleep habits that we may have gained in previous weeks. Every month, we start over.  Plus, she just doesn't feel well at many times during her treatment cycles.  Our understanding is that many other infants with ALL seem to do better with sleep than her.   Maggie has never been a great sleeper, so she just doesn't handle all the extra variables well.

2. Maggie is slowly gaining interest in foods. So, in addition to nursing, she now enjoys grapes and coffee ice cream.

3. Maggie advanced from size 3 to size 4 diapers at 9 months. Now, at close to 18 months, we've gone back to 3s. She's a skinny little thing. She needs to gain weight. This is a bit demoralizing for us.

4. A physical therapy evaluation this morning confirmed that Maggie is not likely strong enough to make the next "steps" toward walking. She was estimated to have gross motor skills of a 9 or 10 month old. This was basically predicted when Maggie was diagnosed. She'll have PT weekly and we have exercises to try at home.

5. Sigh.... Maggie is cheering up more and more as the steroids clear her system. She was quite verbal today, which was nice because she was a zombie for the last week or so. She's getting to be more playful and is giving out lots of kisses.

Anyways, this journey is proving to be a real grind. It is tough and consumes us and our time. But we're grateful beyond words that the cancer has stayed away so far. We'll take these struggles if we can continue to see good labwork on our clinic visits.

Sorry to use the blog as a bit of a pity party. Some days just feel like this, I guess. But here's a story that we enjoyed last week. Maggie, toward the beginning of steroid week, couldn't sleep and wanted desperately to nap. She just couldn't. However, she apparently finds the sounds of mom or dad's showers to be comforting. I left my shower and found Maggie in this pose:

Two blessed and wonderful hours later, we heard the bathroom door open (not to the sound of a crying waking baby, which often happens) but to this:

It's a shame this doesn't happen more often.  I can assure you that our smiles were just as big.

Steriod week

As I write this, we are struggling to get Maggie to sleep. The steroids have really affected her ability to fall asleep on her own. Not like Maggie has ever been able to fall asleep on her own, normally she is nursed to sleep, but that isn't even working this time. She is so tired, but just fights sleep. She will fall asleep immediately if we walk her around, laying her head on our shoulder, but as soon as we sit down or put her down, she awakes and starts crying. It has been very challenging.

We can definitely tell that it is steroid week with the change of her sleep, constant nursing, and her lack of interest in eating solid food. However, thankfully so far she has not moaned or cried the entire day. She doesn't appear to be in discomfort, like she was last month. She is very needy though. Maggie refuses to be put down or by herself. We carry her everywhere. When we have the chance, we will take her for stroller rides around the block and this seems to calm her and has even managed to put her to sleep.

We have two more days of steroids and then hopefully things will turn around. While I will try not to complain about our situation because it has been worse, we still struggle. Please continue to pray for Maggie-- that she will be able to sleep, want to eat solid foods, and her demeanor will not worsen.

Spinal

We are back in the Almost Home Unit this morning for a scheduled spinal with chemo and then Maggie will begin 5 days of steroids. We hope that this next dose of steroids will not affect Maggie as much as the previous dose.

We've still been struggling with the sleep issue. The last two days have been the worst they've ever been. Maggie will not sleep by herself and wakes up about every 20 minutes or so to nurse back to sleep. I don't know what has happened to make it this bad.

Our plan was to come home from the hospital today with something to help this sleep problem, but it appears that Dr. French, Maggie' primary doctor, is on vacation, so we will be unable to get any meds until possibly next week. I don't know how we will survive another week, especially on steroids, but hopefully she'll turn around and start sleeping better.

Please pray that Maggie's spinal fluid will still remain clear of leukemic blasts, that the steroids will not affect her personality, and that her sleep will get better. Thanks so much.

Warm Weather

On Tuesday, we took advantage of the 70 degree temperatures to go to the Cincinnati zoo. Maggie seemed to really enjoy it. When she saw the animals she would point to them and get excited. I think she also enjoyed sitting back and relaxing as we took her around on the stroller.

When she was allowed to eat again (with the oral chemo she is not allowed to eat for 2 hours after administering), she snacked on pretzels and a chocolate chip cookie while looking around at all the animals. She even managed to drink about 8 oz. of milk in a cup. It's so exciting to see her drinking from a cup.

Also, the picture I've posted of Maggie is one from the zoo. She wouldn't smile so we asked her to give us a kiss, thus the picture of her puckering up. She loves to give kisses now, which is great because we love to receive them. When we say "I love you," and "Night, night" she puckers up ready for a kiss. It's so cute. Each day she shows us new things she can do and each day we fall more in love with her.

Surprised

Well, it's a good thing I'm not a betting woman because I was wrong about how the clinic visit went this afternoon. Along with an IVIG (immune booster), Maggie received her scheduled chemotherapy. Maggie's ANC ended up being 2300. Last week her ANC was 840 and I was sure it would continue to drop, but surprisingly so, it boosted back up. Her hemoglobin and platelets have also continued to remain steady, if not even rise a bit. So, Maggie's counts are looking really good right now.

I should also tell you that Maggie is cutting 2 more teeth. The teeth have been slow in coming, but when they come, they come with a vengeance. I don't think that they have affected her too much, but who knows, it probably isn't helping the sleep problem (according to what I read about children teething and it's affect on sleep).

Andy spoke with Dr. French at the clinic this evening and he seems pretty acceptable of our doing Maggie's last inpatient heavy chemo outpatient. I am very happy about this. We would go to the clinic so Maggie could receive her high dose chemo (lasting 4 plus hours) and then she would go home on IV fluids and anti-nausea drugs. Hopefully by doing this, it will ease some of the disruption in our life. We have about 4 more weeks before her last scheduled high dose chemo.

Thank you for your continued prayers for Maggie. Please continue to pray that the chemo will do its job and Maggie will not have any of its side effects.

Sleep?

We visit the clinic tomorrow afternoon for a scheduled IVIG (immune antibody booster) as well as scheduled chemo. I will be surprised though if Maggie actually gets chemo. With her counts dropping so rapidly last week, I highly doubt they will be at or above 500 (her ANC that is). We will see though.

Maggie has been doing fairly well. She is much more open to crawling around in our house versus in just one room. She is slowly taking to more food (or different types). We have found that what was once her favorites, she now turns away from. This is a bit difficult as we try to find new things for her to eat (and those types of foods that the speech therapist suggested). Maggie enjoys the challenging foods.

We are struggling more than ever right now with Maggie's sleep. She wakes about every 30 minutes to an hour wanting to nurse. She also will wake and point towards the living room, which means she wants to go out and play. It has been very challenging. We have been tempted (and have tried on several occasions) to do the cry-it-out method, however, this has not ever been my philosophy when it comes to parenting. Plus, if any of you know Maggie, she is a very stubborn child and will cry until finally she is gotten. She has lasted over an hour before. After trying again tonight, we have decided to forgo this method and research some other less "painful" strategies in hopes that this might give us some relief.

I know that people have said parenting wouldn't be easy, but you know, just once I would love for a break in the challenges. We are tired. The whole saying, "This too shall pass" doesn't apply to us. I'm not sure that any of those "encouraging" sayings were meant for parents of children with cancer.

Munch, Munch...

Maggie is doing fairly well, overall. In the last two days or so, her mood has really picked up. Sleep is our biggest problem now, as she wakes up a lot during the night.

We went to a speech therapist at Children's yesterday for a feeding evaluation and it was quite informative. Since she hasn't eaten very well during much of her treatment, this was scheduled to evaluate her chewing, swallowing, etc. The appointment was well timed from a food input perspective, too--Maggie has been eating quite a bit (her appetite stimulant medicine must be kicking in). We learned about foods that are appropriate for the level of eating "skill" that she has (we were a little bit ahead of where we should be). We learned that she's chewing in the wrong place (with her front teeth instead of her molar ridges) but that she is doing well with drinking from a cup, which is a fairly advanced skill (involves putting your tongue in the right place, having good lip closure, etc.) We're going to have half hour appointments once a week to teach her and move her along with her chewing skills. One of the other things we learned is that the reason for her frequent wake-ups might be that she's still hungry (in the opinion of a specialist, which is nice to have). We had assumed that it was for comfort, or maybe just a habit. Also, it was very interesting to learn to identify some of the cues that she's been giving us and how to interpret them. So this was a very helpful day.

Monday we went to the clinic and Maggie had IV chemo (Methotrexate) and was sent home fairly quickly. Her counts have fallen in half with one week of her oral chemo plus two low doses of the Methotrexate (though her Platelets and Hemoglobin are on the rise, which is good). That's a pretty rapid fall--but it is more good than bad. Eventually, Dr. French may reduce her dose again if her counts get too low. It's good to know that Maggie is still sensitive to the chemo and that it is effectively dropping her white blood counts.

Today, Whitney takes Maggie to the hospital again (3 straight days!) for her monthly RSV virus vaccine. They seemed to have a several day effect on Maggie last month as she was crabby and less trusting. Hopefully we can avoid that this time since we have a little bit of positive momentum building.

Last thing--two little girls in different parts of the U.S., Alana and Lilly, are also fighting infant leukemia and are facing very difficult and discouraging times. Please say a prayer for them and for their families.