Saturday, March 8, 2014

Chemo Day 6 (from Mike)

Yesterday was kind of a punch in the gut, when I took Gwen to see her allergist in Lincoln Park. We needed to go over her lab results, which shows that she is just as severely allergic to the environment and to foods as Ava is. The numbers are hard to believe, because Gwen has never needed an EPI Pen or ever required us to call 911 for her allergies/asthma. But when I step back and look at her skin, she really is suffering. This is what prompted us to ask for a quick consultation. Her skin had tears in all the places on her back where she could reach and scratch, and we didn't want all the buildup of staph to be a risk to Ava once we got home. Thankfully, her allergist gave us not just a short window of time to talk, but gave Gwen and me as much time as we needed.

There are a few things I think we have to come to terms with:

1) Even though we really wanted to (eventually) get a hypoallergenic puppy for Ava to help take her mind off of the chemo and from being stuck at home so much, it just wouldn't be good for Gwen. She's off the charts on being allergic to pet dander (both dogs and cats). So we'll just have to find other ways of having fun. For example, recently Esther and Ava have been playing Order Up! on the Wii. Mostly it has been Esther refreshing herself on the hardest level beaten long ago, which is to run a four star Italian restaurant. She just needs a simple reminder to sometimes hand over the Wii mote and let Ava dredge a couple chicken drums.

2) Gwen has to go around with an EPI Pen now, and we can't let our guard down with what she eats or how she reacts as her breathing has become more of a problem lately. While focusing our efforts on caring for Ava, we want Gwen to know that she can count on us, and not make her wonder if we've forgotten how much we love her.

3) Even though we want Gwen to be a 10/10 match for Ava, a new question is being posed by her allergist, and validated today by the allergist/immunologist here at Lurie: by transplanting Gwen's marrow over to Ava, are we transplanting the same propensity to an immunological disorder that Gwen may also have? So we have many new questions that have been raised. I'm so thankful that this has caused a whole other medical department to give a thorough look at Ava's charts. Allergy/immunology is looking for any possible connections, since for all of Ava's life, that has been the main area of her health troubles. But until further notice, the overall opinion is that Ava has suffered two very unfortunate, but separate, hardships: 1) a very rare set of sensitivities in her immune system to food and the environment, and 2) a very rare form of leukemia.

Today (Friday), was a really great day in terms of Ava's exercise, eating and mood. She was able to walk to the bathroom on her own and take a round trip stroll to the play room. She did look like a grandma, with her back hunched over as she looks straight into the floor two feet in front of her rather than toward where she's headed, or at the colorful walls on either side. But that's okay, according to the physical therapist. As long as she is walking twice a day, that's so much better than being bed-ridden the way she was for three straight days.

She ate two meals today. The first one was just a couple bites during lunchtime. But for dinner, she ate half a bowl of rice and 1.25 ballpark hot dogs. Either that was way too much, since she hadn't eaten in a few days, or those dogs weren't cooked right. Because after crying out with stomach pains, all of that came out of her mouth and onto her bed. I just kept saying sorry to her for feeding her so much. But I think it was a victory just because she was willing to eat all that. BTW, she ate this meal while we watched a Disney film called "Chimpanzee." The baby chimp Oscar was tied to his mom's hip in every way, but when a rival gang of apes attacked, he became an orphan and was left for dead. I thought he was going to die, but Ava said, "I know he won't die." Now most people are better at figuring out the direction of movies than me. But it wasn't just his survival that made it so good. It was how he survived - Freddy the male leader of the group of apes that was attacked, adopted Oscar and took care of him in a way that instinctually never happens in the wild. He even beat up and chased away the leader of the gang that first attacked them, and helped provide a life of peace and security for little Oscar. That was such a satisfying outcome. (Thank you, Disney.)

I got to spend most of the day with Ava, because Esther finally got a chance to go to the Ronald MacDonald House to be with Gwen. Things started to turn positive with Ava's mood as soon as the nurse changed Ava's PICC line dressings. This is something that happens once a week, and done by the professionals who carry a "gig bag" of adhesive removers, pillow cushions, sterilized gloves, bandages, and other amazing goodies. So after it was over, the nurse told Ava, "I'm going to give you your own set of these things to play with and get used to." As soon as she left, Ava inserted a "PICC line" into my left arm, and with the remaining supplies, we did the same with Poby (her favorite stuffed animal). That really made her happy, and we hope the next nurse will replenish Ava's Hello Kitty medical box (which is really a lunch box), so that she can sterilize, tape, and wrap other people's arms. With that, she was motivated to go for a walk to the play room, to come back and eat a huge meal (which she then vomited), and do all these fun things with the kind of joy and relaxed feel that she has had for most of our stay up until she had her spinal tap.

It was also in the play room that one of the social workers tracked Ava down and got her registered with this program called "Monkey On My Chair." Inside this big yellow backpack is a monkey who will sit in Ava's seat in her kindergarten class, where her classmates can put messages and drawings in there for her to receive since she won't be in class for much of the rest of the year. At home, she has a baby version of that monkey to remind her that she can also write messages of encouragement to her classmates and teacher. She calls the baby monkey Oscar, and the bigger one Freddy. : )
Ava still has severe pain in her back, and is still taking morphine as needed, as well as valium to relax the muscles. We hope to continue the exercising no matter how hard it is, so that she might straighten out her posture and actually want to walk around on her own initiative.

I write all this without even the words to express the privilege I sense in helping Ava carry this burden. It's not at all because I think I'm helping Ava. But this sense of being unworthy and on this great mission is felt especially because of all the love that is pouring in from so many people. I keep wondering, "Why are people bringing Lou Malnati's, or Sushi, or donating money, or sending gifts, or writing messages, or reading about Ava and praying for her? Why are so many people who may never have even met Ava thinking about her and sending encouragement to our family?" It's so much that we need people managing the transport of these items, organizing when people can help with childcare, and coming over to help get our house ready when we eventually return. This gives me the realization that I myself am serving a greater cause, and I see myself as one who would simply rush at the opportunity to pick up a bag, or flush the toilet, or wash my hands again if it will help. I'm reminded that I'm not just caring for my child, but someone whom God cares about. According to Jesus, helping someone in need is really doing it for Him. Going through these trials becomes a process of renewal for me, because it reminds me of who this is ultimately for. We often don't get to that realization without the involvement of some suffering. I just don't have the exact words right now, except to say that the suffering serves a higher purpose. Thank you for taking on these difficulties with us, even though you have a million other trials of your own. It has always been a habit and desire of mine to pray for every person specifically who has brought encouragement to me and my family. It is most often the biggest blessing that I can think of to pray, something along the lines of, "God, please bless and fill this person with Your presence, to a degree beyond measure, for your glory and according to Your hearts delight." I have never been at a point where I just can't keep up. But now I am - I am completely unable to keep up with this habit and desire, due to the sheer number of people who are constantly bringing blessings to us. I am totally beat, and it's not even a contest. So I guess my best prayer just has to undergo some changes. That's a super good thing, and I've already gotten started.

Here are some closing prayer requests:

1) For Gwen's new course of antibiotics and steroids to get her back to optimal health.

2) For Esther and my mother-in-law, who are starting to cough and have been wearing the masks.

3) For the doctors to work as a team and to apply great wisdom to Ava's perplexing case.

4) For God to be glorified and in no way for this cancer to be any waste at all.


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