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