Sweet Sweet Girl

Yesterday Elsa's breathing tube was removed around 3:30. There were complications later around 7:45, and they put the breathing tube back in to be able to monitor her and have control over her breathing and heart rates. I will give the full story later.

Elsa is stable now. We are going for an MRI sometime this morning. The doctors are doing tests to make sure that there aren't any other problems we aren't aware of. They hope to take the breathing tube out later today or possibly tomorrow. 

Mom and I showered today, so we are feeling a little better and nobody can complain about the way we smell anymore.

The biggest thing that we need right now is a nanny for the next six months. My mom is looking for someone to live in our house to be able to watch the other kids as Elsa is healing when we are at home and when we go to the hospital. If anyone knows of someone who would be a good fit please let us know. We really need to find someone this week.

Please keep Elsa in your thoughts.

GOOD NEWS

my little sweetlin'

So Chemo has officially started, but it seems a little anticlimactic. Elsa's surgery went well today. They put in a line, which is where they are going to administer all of the Chemo, so that she doesn't have to keep getting stabbed all over her poor little body. They also did a test of the fluid in her spinal column and bone marrow and the preliminary tests came back negative!! That is really excellent news because that makes her stage 3. Anything is better than stage 4 :). After she came out of surgery, they decided to keep her sedated and intubated all day so that they could monitor her and she could get some rest. (She spent all yesterday thrashing in my moms arms.) Cathy came to Indy yesterday, so she was here with my mom after Al left to go home to get some things done back in the real world. I came down to Indy after I got out of class today, so I got here around 7 and Elsa was still knocked out. When my mom said she was sedated I didn't know she meant really sedated I just figured she was taking a nap or something, so I was a little surprised to see her like that, but it ended up being nice. My mom, Cathy and I went to dinner at the hotel across the street after the nurses did their shift change. At dinner we all were crying and it was actually kind of funny (or at least it is now) because our waiter was so normal about it. I guess he probably gets crazy crying ladies a lot. 

Tomorrow will be a different story. They are waking her up tomorrow and letting her breathe on her own, but Elsa will probably be pretty unhappy because of all of the surgery and the Chemo. I brought her a care package with all the Hello Kitty the girl could ever wish for and some nail polish to paint her finger nails. I am so excited to give it to her. 

K Bye

More Tests and Surgery

Today Elsa was moved to the ICU so that she could be monitored, but nothing is seriously wrong. I guess good is relative for her now. We found out that she has Burkitt Lymphoma. This is apparently a good type to have, but I have not looked into it very thoroughly, so I am not sure what the details are. Tomorrow morning at 8:30 Elsa is going into surgery to have a port put into a major artery near her heart. This is like a permanent IV that will not bother her or get in the way so that the doctors can administer her Chemo. While she is under anesthesia they will do a spinal tap and give her the first dose of Chemo and also get some bone marrow from her hip to test if the lymphoma has spread that far. After they test the marrow we will know the stage of the cancer and how intense the Chemo will have to be. The doctors said that as of right now it looks like the Chemo will go on for about 6 months. 

Tomorrow after I get out of class I am going to head back to Indy so I can be there over the weekend. 

The surgery should last a couple of hours so keep Elsa in your thoughts tomorrow. 

Healing

Warning: this one is a little graphic

Things are a little rough right now for everyone. I came back home this afternoon because things had settled down with the recovery and I 

had a night class tonight. When Elsa came out of surgery she was pretty groggy, but she was stable so they brought her back to the room fairly quickly. We are not completely sure how big the incision is because of the bandage, but it looks like it only goes about half way to her belly button and around her side. The doctors attempted to give her an epidural to help with pain after surgery, but they were not comfortable with the way it was going in and after an hour of trying, they decided not to keep it there. There is a sore and some bruising around that spot on her back, and there is some fluid drainage, but they put a compress bandage on it, and they will check it again tomorrow. She has all sorts of cords and tubes attached to her right now, but they were mainly going to be used for the surgery if it had been more invasive (like taking out the whole tumor) and I'm pretty sure a lot of it will be removed in a couple days once she is more mobile and feeling better eg: the catheter and t

he Q ball which gives pain meds right into the incision.

It was really hard after surgery because Elsa was so groggy and she was in so much pain. I had to leave fairly soon after she came back to the room in order to get back to Fort Wayne in time for my class, and leaving her was really hard. She was awake enough that I explained to her that I was leaving, and she got a little bit upset and made a sad lip. Then she asked for a hug, but I couldn't really give her one because she was laying flat and she had the incision on her belly. I ended up having to go to the other side of the bed and kind of hover over her so that she could put her one free arm around my neck. It was really sad.

I guess after I left she continued to be in a lot 

of pain. The doctors said that she should be feeling better in the morning, so I hope that is the case. 

The doctors said that if the biopsy results come back tomorrow, they could put the line in her chest maybe tomorrow or over the weekend and then start Chemo early next week. The length and type of Chemo that they will give her depends on what type of lymphoma she has, so we will not know when exactly she is coming home for a couple days still.

 

I debated a little about whether or not to post this picture 

because it looks a little sad, but that's life and the truth is that she 

is strong and she is doing well considering everything she's been through.

It's Lymphoma

The surgeon just came to let us know how the surgery went. It is now 2:25 and she just went into recovery about 5 mins ago. We should be able to go back and see her in about half an hour. The doctor said that everything went as well as it could have. He said that it is a lymphoma, but we will not be sure what type until we get the test results back from the biopsy. They said the results will take at least 24 hours. Once we get the results we will know the treatment necessary.

The tumors ended up being larger than they suspected. One is the size of a softball and the other is the size of a golfball and they are around the small intestines, but the doctor did not seem worried and said that if you are a two year old and you happen to have a cancer, this is not a bad type to have. 

I am relieved that she pulled through the surgery, and I am a little anxious about seeing her in pain, but I know that this is going to make her better and I hope that when we all look back on this it will just look like a blip in time. 

Elsa will be such an awesome old lady. 

Surgery Begins

All day the doctors and nurses kept coming into our room telling us that the surgery would be in the afternoon. I went to go get something to eat because Elsa wasn't allowed to eat before surgery we were taking turns leaving the room. When I got back from eating, I saw that there was a hospital gurney outside of the room. My mom didn't know anything about it yet, but less than 5 mins after I got back the nurse came in and said that they were ready to take her to surgery because a spot had opened up. We all gave her some love and the nurse took her into the OR. 

We just got an update from the nurse saying that Elsa took the anesthetic well and the surgeon is just getting ready to start his part. We will get another update in an hour. We don't know exactly how long the surgery will take because it depends on whether or not they are able to take out the whole tumor or just do a biopsy. 

Just to let everyone know, we are unable to go to the FaceBook website because it is blocked at the hospital. 

Look at that big Buddha belly!! The girl likes her pizza :)

We are so cute together on our new fangled electronicals.

The Journey Begins

I decided to make a blog as a way for everyone who cares about Elsa to know what is going on with her and keep all of the facts straight. I will start off by giving an overview of what has happened so far and what brought us to this point. On Sunday evening Elsa started to complain about her belly hurting really badly and she had an episode where she was very upset and in a lot of pain, but My mom was able to calm her down and get her to go to sleep. On Monday morning the first thing that Elsa said was that her belly hurt, so my Mom called the family doctor and got Elsa in for an appointment. Elsa never had a fever, constipation or any other really significant symptoms other than her belly hurting, so he was not worried and he gave her a prescription for an antacid. By Tuesday she was getting worse, not better so my mom called the family doctor again and he said that she should call to schedule a CT scan for Wednesday, but my mom didn't want to wait because Elsa was feeling so bad, so she went ahead and took her to the ER. I met my mom at the hospital around 10 once my mom found out that it wasn't good news. At the ER we found out that Elsa has either 2 or 3 tumors in her abdomen. The doctor who was in the ER was not a Pediatric Oncologist, so he didn't want to say too much in fear of giving us wrong information. Elsa got a dose of morphine while we were in the ER, so she felt much better and he referred us to Lutheran Hospital, so that we could meet with a Pediatric Oncologist. We headed over to Lutheran at 11:30, and Elsa fell asleep almost immediately. Al arrived shortly after she fell asleep. She got up and cried a couple times during the night, but in the morning when the doctor came in to talk to us she got another dose of morphine, so that made her feel better again. He confirmed that we should head to Riley today to consult with the doctors there because it is easier to confirm and start treatment of cancer with a larger team and more resources which are available to the larger hospital. He thought that we could do the initial treatment at Riley, and if more treatments of Chemo or anything else were needed we could continue at Lutheran in Fort Wayne to avoid constant trips to Indy. They did a few more tests on Elsa to make sure that she was stable enough to make the drive on her own without the need of an ambulance or the traveling ICU, and the tests came back fine so we headed out for Indianapolis around 11. When we got to Riley they checked us in right away and the doctors examined her. The tumors seem not to be attached to or growing from any organs, like her intestines or kidneys, but there are a lot of possible things that they could be and we just don't know for sure yet if it is cancer. The doctors said that they could not take any action tonight because it was too late. We will not know what exactly the tumor is until they do a biopsy. The surgeon told us that once he operates and sees the state of the tumor, if he is able to, he will attempt to not only take a piece for testing, but remove the entire tumor. Elsa is on the add on list for surgery tomorrow. Early in the morning we should find out about when the surgery should take place. If there is no room in the schedule or no cases are cancelled, the doctor will tack her onto the end of his list and do the surgery in the early evening.            

We have seen Elsa's belly grow in the last 24 hours, which indicates that the tumor is fast-growing. The surgeon said that this is the type of tumor that responds best to Chemotherapy, so that could turn out to be a blessing. 

Right now the Buddha baby is doing well. She was able to eat dinner (after being told not to eat all day long) and she was very excited about that! She is acting like a tired version of herself, which is nice considering all the tests and prodding that she has been through the last couple of days. 

We are so grateful for everyone who cares about Elsa and has expressed concern for the situation. I will keep you posted on what happens throughout the course of this journey.

Katherine Bowden