Chicago

We are in Chicago. We left yesterday afternoon thinking that we would arrive in Chicago after 5 hours of traveling, but Maggie got a bit impatient after 2 hours, so we had to take an hour break at McDonald's to regroup. She did fairly well in the car after our stop (thank you Aunt Judith & Dallas for the Totoro movie-- it was a lifesaver), but we had our moments of craziness. As we arrived in the heart of Chicago, Maggie decided to have a pooping episode all over the car seat, while Andy wasn't sure where to go. It was a bit chaotic and wild while Maggie told me she was going more and Andy was asking me to look at the map. I had one of my moments, to say the least. Finally around 8:00 pm or so, we made it to our hotel in downtown Chicago.

Maggie has been doing fairly well. As of late, I have noticed her acting a bit more lethargic-- laying her head on my shoulder, on the ground, and even napping in her stroller today after awaking 3+ hours after sleeping. I worry, wondering what it could be. It's a luxury to not have her counts checked this next week, but with that comes a bit of worry, wondering what her counts might look like and whether they could be causing this behavior.

We are trying to push food on her, though she just isn't very interested. I did get her to eat a bit this afternoon- she had 2 Ho-Ho's. Fairly good on the calorie end, but not the healthy end. Please pray that she eats and drinks enough to nourish and hydrate her body. Also, please pray that we will have a wonderful vacation with no surprises or trips to the hospital. Pray that Maggie remains healthy and that her cancer is completely gone.

Summer Eatin'

We went to our most dreaded lab today to get Maggie's blood drawn. In the past, Maggie has gotten blood drawn through either her broviac or her port, but since her port wasn't accessed today, they went through a vein in her arm to collect blood. Even before Maggie was diagnosed, when they tried to collect blood, they found her to be the hardest poke. The day Maggie was diagnosed, they spent almost 2 hours trying to find a vein to start an IV and were unsuccessful.

I went into the hospital today with the mindset of giving the technician two tries, and if they didn't succeed, they were not going to use Maggie as a pin cushion. After checking every option of her veins (they even considered the head since it has also been used once to collect blood), the technician said she had one chance with a vein (all the while Maggie was screaming because, to be honest, the tourniquet is the worst part). With all of us holding Maggie so that she wouldn't move (and let me tell you, she is one strong cookie), the technician was successful in drawing her blood.

We were so happy that it only took 1 poke and after Maggie was offered stickers, she was just fine. Even now, Maggie continues to point to her band-aid on her arm and "talks" about it. She is quite enamored with band-aids currently, as she will take the paper off and stick them onto her clothes at home. We're happy that it only takes stickers and pretty band-aids to calm her down. She's almost like a "normal" child.

So, with the lab draw, comes the results. I have been on edge for the last week wondering if she would be able to maintain her hydration and potassium. And along with that comes the apprehension of her counts and whether the chemo continues to do its job. I was telling Andy today that it takes one lab draw to completely change our life all over again. Hopefully we'll never experience that though.

Maggie's potassium is still a bit low. Normal potassium levels begin at 3.7 and Maggie is at 3.4. She has hovered in this area for the last 2 weeks or more. Her hydration levels are right on the border of being low as well. Normal hydration levels begin at 20 and Maggie is at 19.3. This is still okay, but we'd like to see it higher. The rest of Maggie's counts look good, which we are thankful for. We also had her weighed today and she is down to 22 lbs. 10 oz. She unfortunately has almost lost a pound in a week. This is disappointing, yet I knew it would happen as her food intake isn't great. Hopefully though we will be able to maintain her weight and not let it drop any further.

At this current point, I put in a request for Maggie's appetite stimulant to be increased, as well as her potassium. We will see what Dr. French thinks. Also, we are tentatively looking at going on vacation on Friday. This also will need to be given the official 'Okay' from Dr. French, but we are looking hopeful that it might occur. We all are in desperate need of a vacation as the last year has not been easy.

Please continue to pray for Maggie that she will increase in weight and food/liquid intake, and in doing so stay well-nourished and hydrated.

P.S. During my writing of this blog, I got a call from the clinic that we will be increasing her appetite stimulant, but keeping everything else the same. And the very important news that we have been given the okay to do a vacation!

Corn on the cob has become one of Maggie's favorites.

BIG Bite!

Swimming!

We finally did it! Maggie had her first swimming pool experience and it was quite fun. Maggie didn't cry once or ask to be taken out of the pool. The water was a bit of shock to all of our systems, but after getting used to it, she was just fine.

We went to the community pool of a co-worker/friend and there happened to be other children in the water as well. Maggie of course gravitated to them and watched them play with much delight. A little boy around 7 or 8 befriended Maggie and played with her and us. He even asked if he could hold Maggie in the water (which we had to decline the offer.)

After awhile, Maggie grew comfortable enough to kick her leg in the water and even allowed me to lay her on her front and play "motorboat." We were quite encouraged by Maggie's response to the water as I wondered if simply putting a toe in the water would do her in. Hopefully we'll have more opportunities to get her in the water, as it seems apparent that Maggie might just be a fish.

Until then, however, she'll enjoy her nightly baths. They have lasted anywhere from 15 minutes to almost a half an hour of playing in the water and even pulling herself up to standing position. She's missed almost a year of bathing, so we have a lot of making up to do.

Thank you all for offering to allow us to go swimming in your pools. We might just take you up on the offer knowing how much Maggie enjoys the water. Now we just need a little bit of summer again (though we definitely don't mind the cooler temperatures.)

We worked really hard at getting a smile. Though it might not look like it, she did enjoy the water.

'"Hmm... what is this stuff? Look at my hand..."

I think the sunglasses might have been just as much of a hit as the water.

Tube-Free

Today was a monumental day as this is the first time in over a year that Maggie was tube-free. No more feeding tube and no more broviac or accessed port. It feels so good to be over this hurdle. But now our job is to keep her over it. We will be diligent in trying to keep Maggie hydrated and nourished. Next Monday we will have another blood draw to see how she is doing and hopefully this will come back that Maggie is indeed maintaining on her own.

Andy took Maggie to the GI clinic today for a follow-up with Dr. Khan. She was upbeat (and always has been regardless of our situation) and happy with the way Maggie was looking. Maggie's weight was down a half pound or so from last week. Dr. Khan said that her weight may fluctuate a bit before settling as she has depended on TPN for calories for over a month. We have continued in the last 10 days to divide her fluids in half and because of that, Maggie is becoming more in charge of her calorie intake. Like I said before (and worry more than I should), she really needs to keep her weight and hydration up so that we can move on from these last very hard 5 months.

Maggie also had her labs drawn today in the clinic. Andy took her over after her GI appointment, but after coming home, we got a call saying that her labs were diluted and they asked us to come back in so that they could redraw them. We did so and later found out that her counts looked just fine. Her potassium is slowly rising, but being off TPN now, we requested that Maggie be put back on a potassium oral supplement. We just want to stay ahead of the game this time if at all possible.

I de-accessed Maggie this afternoon when given the okay by Dr. French. When de-accessing, we must put extra Heparin in to keep her line open inside her body. After I did this, I was taking Maggie's dressing off and we noticed that she had a nose bleed. This immediately scared us as we thought I'd given her an overdose. We immediately called the clinic and they reassured us that she was okay. It was a bit of a scare though.

We had wanted to take Maggie swimming today since she was tube-free, but decided that the weather was just a bit too cool for her first occasion. We wouldn't want to freeze her for her first swim. We wait patiently for the day that Maggie gets to go into the swimming pool. For now though, she is quite happy to have her baths back.

Please pray for Maggie that she will maintain her nutrition and hydration. This is a huge worry for me as I've seen when she doesn't maintain either of these. We've done so well in the past month and a half that I just don't want to go back there ever again. Thank you for your continued prayers for Maggie. Hopefully we'll be able to continue to post normal, everyday stories as treatment for this disease (we pray) doesn't give us any more surprises.

Water Play

The tags were finally cut off of Maggie's bathing suit that was purchased last year. Due to our schedule and the times that the public pools were open to swimming, we ended up taking Maggie to our favorite fountain at the Greene.

I can't say that Maggie was thrilled to be actually going in the water, but she allowed Andy to run her through the water and experience the splashing for a little bit. I tried to sit her next to the water, but she would have nothing to do with that.

Actually, I believe the highlight of her time was watching a clown painting faces under a tent. She was "talking" about the clown even into the evening as she would point to her face when asked about the clown.

I was talking to a co-worker and friend that I am teaching with this summer at the college and after talking about Maggie and our swimming disappointment (we were a bit disappointed we couldn't take her to a pool yesterday), she told us we were welcome to go swimming in her apartment complex pool anytime, so we will be taking her up on the offer. We hope next week we might officially introduce Maggie to the swimming pool, as the plan is that she will be off of TPN on Monday.

Though Maggie will be off of TPN, she will continue getting bloodwork weekly to make sure that her levels are looking good. This will consist of drawing blood from a vein, which I'm not too happy about. Maggie is a very hard poke, as the last time she had blood drawn they had to resort to doing it from a vein in her head. I'm disappointed they will not be able to use her port, but as the nurse told me today, to access the port to draw blood continually will create sludge and shorten the life of the port. So we will see how this goes.

Thank you for your continued prayers for Maggie. Please continue to pray that she will stay well-hydrated and nourished, especially as she goes off of TPN.

We're done

Maggie took her last dose of steroids this morning, and I think we were both happy to be done with that. Maggie doesn't mind taking her medicines (which is a good thing because she has a lot of them), however the steroid is the worst tasting medicine and when she sees it, she immediately begins to cry. Andy says it smells like rubbing alcohol. Regardless, it makes her scream, gag, and claw at her tongue when we give it to her. But, thankfully, we are done until next month.

Maggie had a better day today compared to yesterday. She didn't moan as much and communicated to us through words, smiles, and some giggles. Her appetite decreased a bit this afternoon and when Andy took her to the store, he said that she gagged in her car seat. Throughout steroid week, we always give Maggie an anti-nausea medicine, Zofran, to combat any nausea that it might give (she has gotten sick on two separate occasions when on steroids). I didn't give her any Zofran this morning since it was her final dose and she appeared to have done well all week. I think this might have caused some of the nausea and loss of appetite.

I wanted to share this funny little story that happened last night. As of late, Maggie has been telling us when she wants to go "nigh-nigh." She did this again last night and so we did our bedtime routine of brushing teeth, taking meds, etc. We went downstairs to say goodnight to Andy and Maggie spotted the cheese puff bag. She wanted one, to which I allowed, even though we had just washed hands and brushed her teeth. She held it and didn't eat it right away, yet still asked to go nigh-nigh.

So, I brought her upstairs and on my way up, she began munching on her cheese puff. She asked for more so I went back downstairs, grabbed the bag and went back upstairs to sit on a chair while she ate. She didn't want to eat, but refused to let go of the cheese puff. I decided to walk her around (this is the way we put her to bed-- walking laps around our house), hoping that when she fell asleep she would drop the cheese puff.

She fell asleep and I laid her down and laid next to her. When I laid her down she opened her eyes, closed them, and then began to take small bites of her cheese puff. I just had to laugh because here she was, eyes closed, practically asleep and munching on her puff. With about a quarter of it to go, she fell asleep- mid munch. I laid a bit longer and tried to leave. She awoke and started to sit up, all the while, dropping her cheese puff. She searched for it in the dark, laid back down, and began munching on it again with tiny little bites.

She eventually finished that cheese puff and all the while I was just praying she wouldn't wake up and give me the sign for more. She didn't and ended up falling asleep. It reminded me of a child with a pacifier, the way she was eating that cheese puff. Maggie never took to a pacifier (though I wish she had since she used me as the pacifier for quite a long time). Perhaps I should have just given her cheese puffs instead.

My words might not have captured the funniness of the event, but I thought it was quite cute. Maggie continues to surprise us in new and interesting ways. We love her so much!

Parallel Process

I realize that this is the second post for today, but I wanted to post something that Andy wrote last night while he was unable to fall asleep. I don't know if he intended for this to be posted, but as I read it in the middle of the night and yet again, I think it speaks clearly to the reality that we face...

Parallel Process

As I push Maggie in her stroller, making laps around our usual trek, I know the people that I see don’t understand. They couldn’t even imagine what we’ve been through. I look at them and think: “you just have no idea….”

You don’t know the struggle of starving a baby before a procedure.

You don’t know the feeling of restraining her for an hour. Failed attempt after failed attempt to place an IV.

Your child’s fever is no fun for you, a real nuisance. You wait a day or two for it to pass. I act immediately, knowing my baby’s life could be in immediate danger. Or is it a sign that treatment is failing, that the bad cells are making a comeback?

You watch your child smile and run through the fountain, not a care in the world. You are oblivious to the feeling of never-ending uncertainty and worry. It never goes away.

I don’t hate you for your ignorance. I wish I had your ignorance. I don’t blame you. But you don’t know how good you have it.

You don’t know the pressure of selecting a doctor, a hospital, a treatment plan, to try to save your baby’s life. “Here are your options. None of them are guaranteed. Choose by morning.” Time is a luxury that you don’t have.

You wouldn’t dare consent to having poisons repeatedly and systematically delivered to your child’s body. We did it and will continue to do it. The side effects? You wouldn’t want to know.

Could you ignore your baby’s desperate screams while a tube is forced down her nose to her stomach? She looks into my eyes through her tears, begging for help that I can’t give her. I hold down her writhing body.

I’ll spare you many details, as many are too graphic, too disheartening, too haunting. Words cannot describe what I have seen, what I think. What I feel.

As we continue our walk, Maggie peeks back at me from her seat. She is too young to speak, but my heart is pained knowing what she could be thinking. “Daddy, you just have no idea…..”