Out of the Hospital – August 8, 2014


(Thanks to our fellow brain tumor warrior, Kallie Brovold of Team Kallie, for the puppy and balloon)

We are happily writing this post from the comfort of our hotel room instead of the hospital. Emma got discharged from the hospital about 6:30 last night. She continues to get a little better each day and we are starting to see her act more like herself each day. Emma is still really sore and has quite a bit of pain especially where her abdominal incision is at, so we continue to try and stay on top of her pain with meds. It is just going to take some time for Emma’s incisions to heal and for the pain to go away. She is able to roll herself over today, which is an improvement from yesterday.

Initially the doctors talked some about discharging her on Wednesday, but when Dr. G. came around to see her she felt she was still in too much pain to send home. Emma’s neurologist came in to see her and said she thinks this surgery will help Emma to feel a lot better, and should hopefully get her going on the right track to make some progress with her motor development again. She did say that it would take her some time to get back to where she was with her balance, sitting, scooting, and walking but it should all come back.

When Emma woke up on Thursday morning she had a smile on her face and looked a little better; however, the nutritionist came in and wasn’t at all happy with how she was eating and drinking. She didn’t feel she was drinking enough on her own yet to go home. We were very disheartened to hear this. We worked really hard and finally got Emma to eat a little bit and drink about 7 ounces. When Dr. G. came in on Thursday she felt like Emma looked better. She said she was fine with discharging us if we were ok with leaving. She said she thought we knew Emma best and that we would get her to eat and drink enough. We had to go down to MRI one more time to have a vent check done, which makes sure her ventricles in her brain look ok after surgery. After they got her shunt reset we were able to finally leave the hospital. We were all very happy to finally get out and get some fresh air! The best news is that Dr. G. gave us the clearance to fly home this weekend. She said flying home will make for a long day for Emma, but there is no reason she can’t safely fly home. So we have tickets to fly home tomorrow. I’m a little nervous about how Emma will do on the flights, but am so excited to get home to Aiden.

The rapid MRI’s that Emma had done after surgery showed that her tumor has grown again in the last two weeks. Both Dr. G and Dr. Chi, our oncologist, feel we should go ahead and start chemo next week. So we will be starting Emma’s new chemo regime of Vinblastin sometime next week. The doctors also looked at Emma’s case again at tumor board on Thursday. The doctors feel that the best thing for Emma right now is to try another round of chemo and hope that it helps to contain the growth of the tumor. They do think that if this chemo regime is not effective that the next step would be to do another tumor resection. They don’t want to do the tumor resection right now because they want to give Emma’s fluid a chance to stabilize and are afraid if they do surgery in the near future it could cause the fluid to go back out into the subdural area again. They are hoping this next treatment will work effectively, but if the tumor begins to grow again, we will probably need to do another resection. As a parent these words are very scary. The thought of having to go through another resection surgery and recovery are very scary, but if it is what she needs then we will do it and fight like crazy for her just like we always do. For now though, we will keep this in the back of our minds and we will pray that this treatment will be effective.

Thank you for all of the continued prayers and support this week. It has certainly been a long week, but we are so very thankful that Emma’s surgery went well and that they were able to relieve her pressure and found the tubing wrapped in her bowel before things became more serious. All of the prayers and messages that we receive are such a comfort and help us to stay strong for our sweet girl. Emma is a tough little girl, and she will bounce back from this like she has all of the other bumps she has endured on this journey. As I sit and watch her this week, I am in awe of her strength and resilience. I often wonder how someone so little can be so incredibly strong! This week has not only been a hard week for us, but another family who fights this horrible disease. We continue to send our prayers and love to Jack and the entire Hoffman family as they make some difficult decisions this week. As I see all of the support from Husker Nation for Jack this week, I am reminded how lucky we are to live in a state that has rallied around these children and joined us all in finding a cure for these children who fight this disease each day. Special thoughts and prayers would be appreciated for the Lutjens and Mathewson families as they are battling a difficult fight each and every day as well.  Thank you to you all. Together we can and will find a cure!!