FREQUENTLY ASKED QUESTIONS answered by Susan

Seven weeks ago today is when we discovered Elsa’s tumors. Wow, what a crazy time this has been!

I am very grateful to be home again this week. Elsa is laughing and playing and enjoying her brothers and sisters. The inconvenience of the week is the IV meds that Elsa needs every six hours. They run for an hour and a half so the longest stretch I get without needing to change something on her central line is four and a half hours. I will sleep in the spring.

Since I’m up anyway, I’m going to answer in part some of the most frequently asked questions:

How is Elsa really doing? What is her long term prognosis?
Elsa really is doing great considering that she is being poisoned on a regular basis. It has been startling to realize that the biggest danger to her now is the cure and not the cancer. The chemo is so intense, it depletes her completely. It is scary to see her so vulnerable to infection and defenseless to fight it off. She has not had any scans since her first stay at Riley so we don’t know exactly what the tumors are doing but she has been doing well enough in her recovery cycles that we have not had to delay any of her treatments. If all goes well we have just two more treatments at Riley!! I would love for Elsa to be healthy at home with family and friends for Christmas! I would love that for all of us!

After Elsa is finished with treatments we will continue to have a close relationship with the Oncologists in Indy and in Fort Wayne. Elsa will be closely monitored for the next year and will be seen regularly until she is 20.

I am so grateful to be living in this country at this time. Twenty years ago only about 15% of kids with Burkett’s Lymphoma survived; now the survival rate is about 85%! (I have to say that as a mom I am uncomfortable with any number under 100% but I have a clear intellectual understanding that 15 is a much smaller number than 85.)

How are you (Susan) doing?
Ok. Truth time. I am a mess. I’m tired, stressed, anxious, and a bit angry. I am also overwhelmingly grateful, humbled, loved and blessed. My wise brother, Will, said it best. I am living! Life is messy.

Al has done a wonderful job of making sure that I get out and get some breaks when I can. The problem is that I don’t ever feel really rested. A few hours away are wonderful but I carry all of this around with me. It has actually started to feel normal in the hospital and surreal out in the “real” world. I don’t know how long it is going to take for me to feel free to exhale.

I have now been in the hospital with Elsa for five of the past seven weeks. Enough said.

What is it like day-to-day in the hospital?
It is stressful, boring, and exhausting to be in the hospital. I have learned only too well that Elsa’s condition can change for the better or for the worse very quickly at any time. Elsa is either a very sick girl, lethargic, in discomfort, fussy, or she is active and demanding, interspersed with being charming, delightful, and a little monster. I call it “The Making of a Princess.” Whatever Elsa wants to eat, whatever she wants to watch, whatever she wants to do, whoever she wants to talk to, whatever might make her feel better, she gets right now, if she says please. It is a full time job for me! (I try not to think about what she’ll be like when this is all over…)

There is a constant stream of doctors, nurses, child life specialists, social workers, and orderlies coming into the room all day and night. A hospital is not a restful place!

I am in the room with Elsa 24/7. At Riley there has been no bathroom in the room. I have to call a nurse in to watch Elsa so I can go to the restroom off of the family lounge. Eeeu! I have been sleeping in a chair (some of them fold out better than others) in the room with Elsa. At Riley I am not allowed to order hospital food for me to eat. At Lutheran I am allowed one meal per day. I have learned to pack my own food and Katherine bought me a travel Keurig coffee maker so I am all set now! I try to shower every few days (whether I need to or not). At Lutheran I have had access to a shower off of my room but at Riley I have had to be a bit more creative. I try to think of it as an adventure and not as a personal humiliation…

I have learned that it is my job to know Elsa’s medical history better than the doctors or the nurses or her three ring binder of a chart. I am the expert on Elsa and I need to be attentive whenever anyone comes near her.

One of the most out-of-my-comfort-zone responsibilities I have had to take on is to care for Elsa’s central line. This is the tube that was surgically placed into Elsa’s chest to administer medications and fluids. The up side of this is that Elsa does not have to be poked for IVs over and over. The down side is the constant guarding of infection. This is just another thing that has become “normal”. IT IS NOT NORMAL!!

How are the other kids doing?
Jay, Maya, and Tadd are my heroes. I am so proud of how they are handling the turmoil in their lives. Three out of the four hospital stays I have left the house suddenly because of an emergency in the middle of the night. I cannot imagine how stressful it is to wake up in the morning and have your mom and sister gone again. Al has been at home as much as possible but he has needed to travel quite a bit the past seven weeks.

The kids have been left home with Molly, the new nanny. I don’t know what we would have done without Molly. The kids really do like her! She is an amazing young woman. (Thanks for coming back every week, Molly!)

So many people are helping with the kids. Their teachers have been beyond understanding about their late and missing assignments and occasional emotional outbursts. Friends are driving them, taking them in, including them, feeding them, and fixing their hair.

I believe that it is only natural that the kids are stressed out and venting here and there. Al and I are being very conscious of taking time to play with the kids. We are having a crash course in letting go of the small stuff. One of my favorite trauma experts, Heather Forbes, suggests entering into every interaction with your child by asking yourself, “How can I use this interaction to improve my relationship with my child?” This approach is powerful in times of stress or when your child is lashing out. Instead of lashing back we are challenged to offer compassion and understanding…

I just miss my kids so much. It is so hard to talk to them on the phone. I need to hug them more often. ( I like to think that they need hugs from me also.)

What can we do to help?
We could not have made it through the past seven weeks without the solid, practical help from our friends and neighbors. We have been blessed by so many acts of kindness and compassion: meals, house cleaning, lawn mowing, child transport, and more. We have felt the prayers of our friends and family and others. This is not a situation where we can say, “Oh no, we’re fine, thanks.” We are not fine! We need help!

Please continue to pray for Elsa and our family. I don’t really know how God is going to use this experience in our lives but I’ve already seen evidence that it is going to be amazing!

Blessings,
Susan

little bird little bird jump through my window

Riley

On Monday the 28^th Suze drove my mom and Elsa down to Riley. Elsa was doing really well when they went down to the hospital and she was a good sport about being

 back at the hospital. I went down to Riley that afternoon after work. The IT chemo through her spine went a lot better than last time and Elsa handled the sedation really well. She also came off the Kepra, which was the anti-seizure medication. She isn’t twitchy at all, so that is good news as well. She was feeling well enough to do some craft projects and play with stickers and she was eating well.

There were a couple funny Joes who came to visit while we were at Riley. The first was Joseph Addai from the Colts came to our room to visit Elsa, but we had no idea who he was, so that was a little awkward. He didn't even introduce himself when he came in and we didn't really have anything to say. The other Joe who came to visit was one of the workers at the hospital who come to the rooms to clean and get plates after meals and things like that. Well he came to the room one day and he was wearing a paper crown because it was someone’s birthday and it matched his outfit so we took a picture. It’s a little odd once you start recognizing people who work at the hospital or have the same nurse for more than one visit.

After a final dose of the IT chemo on Friday afternoon (and my mom’s battle to keep Elsa from eating all day because of it), Jess drove them home that Friday evening.

Home
When Elsa came home on Friday she was doing really well. If you didn’t know she was sick you wouldn’t be able to tell by watching her. She was playing and acting like a normal healthy child for the most part. After a couple days she finished her medicine and she was dancing around singing “no more medicine!” She is losing her hair, and she has a pretty legit balding patch on the crown of her head. She does still have quite a bit though and it will be funny to see how much she actually loses because the doctor said that she would lose it all in 3-4 weeks and its already longer than that.

Back at the hospital

Elsa spiked a fever Wednesday night around midnight, so my mom went ahead and took her into Lutheran. She doesn’t have a fever anymore, but her white blood cell counts are at .4. Her hemoglobin was low as well, so she got a blood transfusion on Thursday. She is doing well in the sense that she is laughing and talking, but she doesn’t look that great on paper. The doctor said that if things go as planned that Elsa could come home on Saturday.

She has two more 3 week cycles of Chemo left, so this process could be over much earlier than we had originally planned. We’ll just have to keep our fingers crossed and hope for the best.