Our daughter Lily was diagnosed with a rare brain tumor at 4 months of age, this is a blog about her and our journey since then.
Praise God!!! We got an early New Year's gift today! There is no sign of tumor recurrence in Lily's MRI. Thank you so much again for all your prayers and well wishes -- they were especially meaningful this time around because of the seizure scare, sibling illnesses and all the holiday stress that was going on. I hope you all have a wonderful and safe New Year's. Please know that you all will be thought of as we welcome the New Year and know how blessed we are to have your love and support.
Wow it's hard to believe that 3 months have gone by so quickly since her last MRI. Lily is scheduled for her next MRI this coming Wednesday, December 23. Please keep her in your prayers that she's still clear and the tumor hasn't come back. Last week, she gave us a little scare we had to take her to the ER at 2am on Tuesday because she woke up shaking and they wanted to monitor her and run tests on her to make sure she didn't have a blood infection. Thank God all her blood tests came back negative. So now we suspect her shaking may have been a seizure. Lily was released from the hospital the next day but on Thursday at the beginning of her PT session she started doing some startling motions that her therapist suspects were mini seizures. Lily had an EEG done the Tuesday before Thanksgiving and I thought since I hadn't heard from the neurologist that 'no news was good news' but the oncologist team contacted the neurologist since they suspect she was having seizures and apparently her results were abnormal (why I wasn't contacted -- is another story) and they have up'd her anti-seizure medications and we are awaiting for an appointment with the neurologist. She has had a couple of small tremors which causes me to hold my breath but hopefully she won't have any major seizures before we can see the neurologist. I am just hoping for a quiet, hospital free holiday :-) On a positive note, she slowly progresses in development. Her two bottom tooth have broken through her gums so it looks like rice kernels stuck on her gums and just today she put a puff in her mouth. We were cheering her on as she put the puff to her mouth! Small accomplishements for us but great leaps for someone who has had brain surgery. I hope that you all have a nice holiday spent with loved ones and thank you SO SO much from the bottom of my heart for keeping Lily in your prayers.
I think this was the worst Halloween I have ever had. A couple days before Halloween we got a note in our Goddard parent mailbox saying that there was a stomach bug going around school. Well Halloween morning I took Danika to her dance class and halfway through class she was complaining that her stomach hurt but we had a birthday party for one of her classmates to go to, so she said that her stomach didn't hurt bad enough to skip the party. I should have listened to my motherly instinct that told me not to go to the party but I didn't. So an hour into the party, Danika comes sits by me and all of a sudden throws up and this is not a little throw up - this is gushing throw up. So picture this, there is a pool of throw up on the ground, Danika is crying and Sammy is just hanging out in his baby bjorn. Yup I was carrying him! So one of the mothers at the party offered to get Sammy from me so I can comfort Danika and clean up after her. I felt so bad! We'll see if we get invited to anymore birthday parties after this. :-) Actually, the parents were being all nice and helping me but I felt bad and hoped that I didn't scare any of the parents. So we hightailed it out of there and went home. When I spoke to the nurse to find out how I should treat Danika's illness she told me to be very careful because what she had was high;y contagious! Well here I am already freaked out about Lily catching a cold and now we had to deal with a real virus entering our house. So we tried to keep Danika in her room but she didn't want to be left alone (I am SO going to make her read this when she becomes a teenager and locks herself up in her room). Then we had to make sure Lily didn't come into contact with anything of Danika's and then comfort Prince Sammy because he was acting like he was starved for our attention - clearly we were outnumbered! Danika was feeling better after 5 hours but we still had to keep the kids separate which is the hardest thing to do! Thank God my brother came to help us out a little for a couple of hours that evening. I am so scared that this is just the beginning of the many viruses and flu bugs that are going to visit us this season. I wish I could fast forward to April so we can bypass the whole flu season. I am just praying that no one comes down with anything serious, especially Lily.
2 words -> Praise God!!! Lily's MRI results were good, she is showing no signs of tumor growth and her midline shift continues to improve slowly. Thank you ALL so much for your prayers and wonderful thoughts for Lily and our family. This is truly proof that prayer works!!! God-willing she will continue to respond well to the chemo and all the rest of the upcoming MRIs will show no signs of the tumor reoccurring. I must admit it was a little nerve-racking waiting for the test results but all your well wishes made the situation more bearable. Thanks SO SO much for all the love and support!!!
Lily did so well through the MRI. She couldn't eat anything after 2am so Magnus gave Lily a bottle at 1:30 am and she wasn't able to eat until after the procedure which was supposed to be at 8am but they ended up taking her in at 9:30 so she didn't get to eat until 10:30. 9 hours without eating and all I heard out of her was a whimper to let me know that she was hungry. Such a BIG difference between her and Sammy. When Sammy had his MRI done after he woke up from being under the anesthesia he started crying even though he was hoarse and groggy. They were given the same gown so I thought I would post the pics of them in the same hospital gown. ;-) By the way these were taken before the MRI was done.
So when Lily's neurosurgeon was recommending Sammy get an MRI done to make sure he didn't have a brain tumor, I was thinking to myself "DEFINITELY! Even if insurance won't pay for it." But now that we actually got it done and we have just received the bill my whole perspective changed or at least the attitude of 'at any cost' went right out the window. Even though insurance is paying for a large chunk of the procedure our share is still a pretty hefty sum. So when I go to pay the bill I will just have to recall my very first response of 'at any cost' and be thankful that Sammy is healthy and sacrifice a few pedicures, hair colorings and that new Gucci purse I've been wanting ;-) With all the hospital and specialist bills that we are receiving I often wonder how people without insurance handle having an illness or having a dependent with an illness. Hopefully Pres. Obama's new health care proposals will actually bring down the cost of health care. We'll just have to wait and see.
We have scheduled Lily's MRI for this coming Wednesday, September 16. Please
say a little prayer for her that the MRI goes well and that it still shows that
her tumor hasn't grown back and if you have some spare prayers can you pray for
God to send a little sense of calmness to me that I don't drive myself batty
with worry and anxiety while waiting for her in the waiting room for her MRI to
finish and also ask God to give me more patience as we wait for the results.
I get a weekly Bible inspiration/reflection email and received the following
today. The topic was "We can trust in God!" and I am taking it as a sign... :-)
The question is not "Does God still heal people today?" but
rather, "Is it in God's will to heal in any particular case?"
That is where prayer and faith come in; we can trust in God!
I am hoping and praying that my next email will be 'GREAT NEWS'.
Hope you all have a great weekend!