Final IT

Elsa had her last scheduled I.T. procedure today and everything went really well. At this point it's just a waiting game until her scan. I just wanted to do a quick update to say that everything is going really well with our family.

In case people were wondering, Elsa still has some hair. It is very unusual for chemo patients to have any hair at all and she still has a pretty good amount. (The doctors told us she would lose it in the first 3 weeks)  I was convinced that she still looked normal, but after looking back at pictures from this summer it became glaringly obvious to me that she does not look normal. haha On the bright side, once Elsa starts growing some fuzz it will look like she has a lot more hair than she does at that point because she has all these random stragglers that survived the chemo!

That was a little random, I know, but thats how it is.

Peace out

Scan Results

Elsa's scan came back with a 1 cm chunk of active cells. This section lit up on the scan as active (which usually means cancer) because there was cell activity in that spot. There is a scale to see how active the tissue is and this tumor read very low on that scale. The doctor called my mom a little while ago and stated the options. There were a lot of them so I won't list them all. The biggest contenders in the decision were surgery to remove the tumor or to wait 6 weeks to do another scan. The risks for doing the surgery were not worth the benefits of taking it out. There is no way for the doctors to know without going in there whether it is cancer or just a tumor at this point. If they take out the tumor it would be risky because it is back behind her intestines. The benefit to waiting is that the doctors will be able to see if the tumor is still growing and changing or if it is just calcified tissue. The conclusion was that waiting the 6 weeks and reassesing the situation would be the best option.
One thing that I was worried about was Elsa's recovery. Every cycle of chemo has been a harder and slower recovery than the last. If Elsa went right back to having chemo regularly again she would have a hard time recovering because her body is so weak. Now that we are waiting before (potentially) having Elsa go through chemo again, there will be a chance for Elsa to recover and get stronger before the next cycle.

January 11th will be the next scan. If it shows that the tumor has grown then Elsa will most likely start chemo right away.
For right now I'm just glad to have a peaceful and hospital free Christmas season

elsa still has a cancerous tumor about 1 cm and we'll have to do about as much chemo as we've already done. i'm at work so i'll update in detail this evening.

scan tomorrow

This is just a quick update but I just wanted to remind everyone that tomorrow is Elsa's scan. 

Over the weekend she had a slight ongoing fever but it never got high enough to require taking her into Lutheran. If we had had to take her in she would have missed the scan because the hospital does not release people until they have been fever free for 48 hours. That was a huge relief. Tomorrow my mom is driving down to Indi and the scan is scheduled for 2pm. We will hopefully know the results of the scan sometime Wednesday.

I'll post as soon as we find out.

Fingers Crossed.

Keep Elsa in your thoughts for her scan Dec 1st

Last week at Riley things went pretty well. It's always good when the doctors don't have a whole lot to talk to you about. Elsa was very active most of the time, but at the end of the week she got a fever for a little while. It's hard because when Elsa is at the hospital she is either tired and sick or crazy and moving everywhere. It's nice to see how quickly she bounces back after not feeling good though, so I won't complain about that. She came home on Sunday evening of the week that she had Chemo. The next day (Monday) she had an I.T. procedure (Chemo in her spine) and that went really well, but that night she started feeling sick. She ended up throwing up four times, but after she started throwing up I went to CVS to fill the prescription that my mom had gotten a few cycles back from Riley. It is a really intense nausea medication for cancer patients and the side effects are really bad, so my mom hadn't wanted to fill the prescription unless she needed to. (Elsa has thrown up a couple times during her treatment, but it has never been a very serious thing.) Anyway, when I went to CVS the guy at the pharmacy counter said that it would be an hour wait to fill the prescription. I told him that the meds were for my sister who has cancer and she was at home throwing up and he told me that he would fill it himself. He had it ready in 10 mins. I thought it was so nice that he would do that because it was really busy in there and he didn't have to do anything special.
That Friday Elsa had a blood transfusion and everything went well with that as well.

Elsa has a scan scheduled for December 1st to check if all of the cancer is gone. There is a chance that there is still some residual tissue. If that is the case they will have to do another biopsy to see if it is cancer or just tissue. If it is cancer then we have to start Chemo again, but if it is tissue then we are done with Chemo. I don't want to get all excited and unrealistic about this because if something shows up on the scan then we still have more to go through. Even if the scan comes back clear, there is still major surgery to remove Elsa's central line.
We aren't quite done with all of this hospital stuff, but hopefully we are getting there soon.

back at Riley

It's been a while since the last time I updated the blog. I feel a little lame always saying the same things and last time we went to Riley nothing new was happening (besides a little Chemo here and there haha). 

Last cycle my mom was really excited because her friend Liz was coming from Colorado and Liz was going to be at Riley for the first couple days then I was planning on coming for a couple days later on in the week. Usually my mom is pretty isolated besides the couple days that I am able to be at Riley, so it was her ideal setup. Unfortunately this was the same time that H1N1 was becoming a big deal and Riley made new visitor policies that we didn't know about until we got there that Monday morning. Liz came to Riley to meet my mom and she wasn't able to stay or even go back to the room briefly because of the new H1N1 policies. It was such a bummer for my mom and for Liz too. I wasn't going to be allowed to come either but as the week went on the rules were loosened a little bit and since I was an adult sibling I was able to come for a couple days. We weren't really supposed to leave our unit at all. That means that we couldn't go to the cafeteria or even the Ronald McDonald house to shower (there is a shower that we were allowed to use on our floor but it is not nearly as nice). It was no fun but we managed.

Al went to Riley for the weekend last cycle so that my mom could come home for Maya's birthday. It was nice to have my mom home with the kids and be able to go out in public and not worry about having to be home to administer medicine or anything like that.

Every cycle before this past one, we have had to go to Lutheran in the middle. We kept worrying that we would have to go there, but Elsa never ended up getting a fever. That was just so nice for everyone. My mom especially enjoyed having such an extended period at home. Last week Elsa's counts dropped low, so we made an appointment for her to get a blood transfusion and platelets. We thought that it would be an overnight stay because somehow we always end up staying longer than we hope. When my mom got to Lutheran they tested Elsa and her counts had all gone up just enough that all they ended up doing was a little bit of hydration and they were home before noon that day. It was such a relief.

Today my mom came down to Riley with Elsa. In the clinic when they checked in Elsa's blood counts were tested and she just barely had counts high enough to start Chemo on time. We have been so lucky to not have to delay any treatments because of her recovery. Our nurse is kind of a jerk but whatever. She just doesn't seem to have any humanity towards us and wants to follow all the rules exactly. My mom and I have always both slept in the room with Elsa all along and she told us that we aren't both allowed to this time. I think we are going to end up "accidentally" both falling asleep in here. haha We are such troublemakers. I don't think they'll wake me up to tell me to go sleep in the family lounge. I'll just tell her to try to sleep in there :) Its no good in there if you couldn't tell. The accomodations in the family lounge aren't too bad, but there are always people going in and out and its noisy from the bathroom and the tv. I would prefer to be in the room anyway just because I want to be here if something happens. I will update in a couple days :) I promise.

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. 

Here we go again.

Alright. This week has been really good overall. Elsa was giggling and eating a lot. If she hadn't started losing hair you wouldn't even think she was sick. She did start to complain about belly pain the last couple of days, which makes us think the tumor started to grow back a little bit. There is just no way to really know. 

We are heading back to Riley tomorrow. My mom is leaving in the morning and I am leaving after work and I'll be there from then through Thursday. I am really tired and stressed out, but it will be good to be able to have the time there. It is so hard to be home when I know that Elsa is in the hospital. 

We are so grateful for all the help we have received from everyone. It is so nice to see that people care.

Back at Home. Crazy Weekend.

Sorry that it took me so long to make this update. A lot of people have been asking me to do a post but it has been a crazy weekend. Elsa came home from Lutheran on Friday evening. She has been slowly improving since then. She still feels really uncomfortable, but she is acting more like herself and its nice to see her walking around a little bit.

Tadd's 6th birthday was Saturday, so it was nice that my mom was home for that. We had a family dinner and Tadd opened presents. My mom was able to get out of the house a little bit on Saturday to shop and today for the Johnny Appleseed Festival. 

We saw some random people at Johnny Appleseed that we hadn't seen in a long time and don't know very well and they of course asked how we were doing. My mom told them about Elsa and it just sucks to have to talk to people about it when they don't really want to hear bad news and they don't understand that we are serious and it really is bad. People just don't really seem to understand what it is like and they think that just because we are continuing to live our lives that things are fine. I am so over this whole thing and I want it to be over. 

WAY TO BE NEGATIVE, KATHERINE :) Thats me being real.

We are hoping to have a nice week at home with Elsa before another round of Chemo at Riley a week from Monday.

Fever, Sores and Hospitalization OH MY

Elsa got a fever on Sunday morning, but we decided to watch it and it went back down on its own. When my mom was about to go to bed she checked Elsa one more time and she had a fever of 101.6, so she called Riley and they told her to go to Lutheran. My mom came to Lutheran on Sunday night/ Monday at about 1 a.m. and Elsa was admitted. One of the common side effects of Chemo is fever, drop in white blood cell count and sores around the mouth. This is exactly what happened. When Elsa left Riley on Thursday her white blood cell count was 3.1 and when she was admitted at Lutheran the count was at 0.5. The healthy range is between 5.5 and 17.5 so she has obviously dropped a little low. The doctors here said that they want to keep her here until her fever drops, her blood cultures come back good (she doesn't have an infection) and her white blood cell count starts to rise again. The room next to us is a boy that my mom saw at Riley who is at the end of his treatment for Lymphoma as well and his parents said that he has had to be hospitalized for the same symptoms almost every single time he comes home from Riley. That is going to be awesome. 

Elsa is being such a trooper, but she is very miserable. The sores by her mouth are open and bloody and her diaper rash from the toxic Chemo pee is just starting to heal. She is achy and uncomfortable constantly and she has not wanted very much to eat or drink all day. 

We hope that she gets out of her sooner rather than later, but the soonest she will leave Lutheran will be four days. Lets shoot for that. She just needs to break this fever first.

She's home

Elsa is home now. They got back late last night. My mom said it is almost as weird to be home now as it was to be at the hospital because now its like they are in the normal world but things still aren't normal. Before they left the hospital Elsa had to get her first blood transfusion because she was low on hemoglobin. Now that she is back at home she will continue to take meds that go along with her Chemo. 

The home-care nurse came to the house today to show my mom how to care for Elsa's central line and administer the medications. Elsa will have to get IV medicine every day as well as oral medication. That is really weird because you don't normally think of getting IVs at home. but that is why it is nice for her to have the central line because she will not have to poke Elsa to give the IV.

Elsa was really weak and tired today. She didn't feel very good either. Her skin is a purplish color and the doctors said that she will bruise easily now. 

It is good that she is home now, but it will still be a few more days before she starts to recover from the last dose of Chemo. That will be the hardest thing about this whole process is that right when Elsa starts to recover from the Chemo they will give her more. It sucks but I guess we just have to do whatever it takes to get her back.

I'll let you know when there is any news.

Coming home tomorrow!

Yay! Elsa is coming home tomorrow. They took her off all of the monitors this morning! There will be one more dose of medications tomorrow morning, then she will come home later in the day. The meds tomorrow are supposed to be like a miracle grow for her white blood cells. There are some side effects from all of the drugs they have been giving her. For example Elsa has not been talking a whole lot and she has been squeaking and grunting a little. She is still twitching a little from the seizures and there are still some glitches they are trying to work out with the seizure meds to try and find the right balance.

Elsa will be home for 2 weeks before she goes back to Riley. If there are any problems she can go to Lutheran instead of going all the way to Indy. It will be so nice to have her back at home and not so far away. 

My mom will make a post about the rules for people to see Elsa once she is home. We are going to have a family meeting to decide on things together. 

I think that's about it. I'll let you know once they're home. 

Today is a good day.

We got our smiler back

She wanted love from everyone and she was recognizing us today!

On Friday evening Elsa began the medicine for the seizures. There were some improvements on Saturday, but not as much as the doctors wanted to see. She was awake and moving a little, but she wasn't responsive or alert. Over the night last night the dose was increased and we can already tell a huge difference. This morning she was smiling and asking for crackers and juice. She was awake and talking to the kids a little bit. It is such a relief to see glimmers of her. When I left the room to go change Elsa reached up and asked for a kiss and it was the sweetest thing.

We are hopeful to see continual improvement in her over the next couple days.

Yesterday she began the second round of Chemo. They are not doing the spinal tap one right away because that procedure requires sedation and the doctors want to see how she responds to the seizure medication before they sedate her again. 

Right now Elsa is resting in bed, but later on today when she wakes up I think she will be more like herself.

Do you want to hear the good news or the bad news first?

The good news is that we found out why Elsa has been so lethargic and not herself and it is completely treatable.

The bad news is that Elsa is getting tiny seizures caused by respiratory distress. 

We are all so relieved to know that there is a reason why Elsa is acting differently. They started her on medicine for the seizures this afternoon and we are supposed to see gradual improvements and hopefully she'll be herself in 48 hours. The condition will go away eventually so she won't be on this medicine for an extended period. 

It is hard to know that she is going through all of this and having to take so many different medications then have to deal with their side effects, but at least we have answers.

The tumors have shrunk drastically in size. The bigger one is now half the size it was at the time of the biopsy and the small one is completely gone. WOOHOO!

P.S. The nanny starts this weekend, so I think we should all wish her luck. What a crazy 6 months this will be for her. haha

This was a couple days ago when Elsa was still in the ICU.

She is now completely off breathing assistance.

This is Elsa now. It is really sad to see her so lethargic, but I will take what I can get from her and as long as she is breathing I am happy. 

It seems like Elsa has reverted to protecting herself by shutting down emotionally. I don't blame her for doing that because it would be so scary to go through something like this and have no capacity to understand what was going on. I figure that right now we need to focus on getting her health under control and when this is all over we can get her back to her old self. We have already done it once. We just need to show her love and security.

The doctors said that Elsa can most likely come back next weekend. (No days are for sure because it depends on how she responds to treatments.) My mom is planning on coming back this weekend to get things settled at the house. 

I decided not to go to school this semester so that I can be with Elsa and not have to worry about more than that. Life is complicated, but this decision was not. 

I'll post more when I know more. It will be harder to post everyday now that I am back home because I don't have internet at my apartment, but I will do the best I can.

much love and more to come

Post from my mom

Oh my word, what a week I have had!

 

I am overwhelmed by the blessings and the miracles we have seen this past week. Friends, you have loved us well!

 

You all know that Katherine is a Rock Star for doing this blog. I will try to be a guest poster when I can. 

 

I’m sure you can understand that it has taken a while to wrap my mind around all of this. It feels a bit surreal at times; like I was plucked from my normal life and plopped into other. I have been so busy trying to keep up with understanding what is happening with Elsa, learning a new medical language, and helping to care for her. I have not been sleeping very much….

 

Updates:

Tuesday Elsa got her breathing tube extubated in the late morning. By Wednesday morning she was completely off of oxygen and breathing well on her own.Wednesday afternoon we were moved out of ICU and back into a regular room!

 

Elsa’s tumor is shrinking well and her kidney is tolerating the toxins being released into her little body. She is scheduled for more Chemo on Friday and if all goes well we can go home a week from Saturday for about two weeks before we will need to return for more chemo. We will be on a schedule of chemo every three weeks and a hospital stay of five or six days every time.

 

The issue we are dealing with now is that Elsa has been completely off of sedatives since 8:30 am on Tuesday but she has not returned to us. She will open her eyes but she does not respond to my voice. She does not seem to know me from anyone else. She is not sitting up. She is not eating. She is not reaching for things. (Is this starting to sound familiar to those who knew Elsa when she came home at 14 months old?) Elsa has had an MRI and an EEG. The doctors can find no medical reason why she is not alert and functioning as before.

 

I believe that Elsa has gone back to a place that she knew during her 14 months of severe neglect. She is even rocking her head as she did then. She is reacting to the TRAUMA of the past week the only way she knows how. 

 

Elsa has broken my heart from the moment I got her and realized the effects of her neglect. She has taught me and challenged me and inspired me. I see that she is going to continue to do so.

 

I had thought that the past year and a half were almost unbearably hard; parenting Elsa through her insecure attachment, carrying and holding her until I needed physical therapy, reading and learning everything I could about neglect, abuse, trauma, and attachment. I thought that I had turned a corner and the tough stuff was behind me. It turns out I was only in training for the really tough stuff! I am ready, though. I was paying attention during the year and a half training period and I know what to do!

 

I am just a little nervous about what else God is equipping me to do. I feel a little loaded down by equipment about now…

 

If you see my other children please remind them that their mother loves them more than ice cream.

 

Please continue to pray for us. I have seen so many prayers answered this week! If you are reading this, you are a blessing in my life.

 

Love,

Susan

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