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!
This Saturday, Lily took her first 2 steps by herself and without her walker! Oh happy day!!! I cannot wait for the day when I can just put her down and she'll be off and running. Especially since she is getting heavy to carry. :-) Last week, her physical therapist was saying that she wouldn't be surprised if she walked any day now and I was just shocked at how fast it is happening! Lily is truly amazing! You can't tell her she can't do something because she will do it. Actually I think this can pertain to alot of handicapped children - they truly are amazing at overcoming their adversities! I was watching 'Extreme Home Makeover' last night and the family had adopted a 6 year old triple-amputee and the stuff she was doing on the show was truly amazing!
Lily had her OT evaluation yesterday and they are recommending her for twice a week for 6 months. OMG as if she doesn't already have enough appointments they want to add another and two a week!!! Because her trunk is weak and she isn't grasping or trying to grab things they have evaluated her at a one-month level for her motor skills. I am going to see if we can do the OT services here at Mission so I can take her on Tuesday and Thursday since I am working from home on those days. In the meantime they have stressed tummy time for her which should increase her trunk strength and hopefully everything else will be quicker to relearn. So between the appointments and sorting all the billing issues from the hospitals and specialists this has become a full time job and my leave of absence ends in 2 1/2 weeks. Eek!!!! I am sure things will fall into place, hopefully. Thank God Sammy's MRI didn't show anything so we don't have to see any specialists for him and Danika's eczema is healing so her allergist said he just wants to follow up in 4 months. So the only appointments I have to worry about for them is their well exams (knock on wood)! I am hoping to enroll Danika in ballet but we'll see if I can handle another scheduled thing to add to my calendar. These are the times I wish I could clone myself.
Sammy's doctor, Dr Cox, called Friday evening and the MRI results showed no tumors or bleeding YIPPEEEE!!!! But the radiologist noticed that he had showed some immaturity of myelin development and he recommended another MRI in 6 months. Dr. Cox said that she didn't think it was anything to worry about as long as he was developing fine, she just wants us to monitor his development. Plus she said that she is not sure what the norm is since they usually do not do MRIs on healthy 4 month old infants. He actually rolled over by himself yesterday so he seems to be developing normally. I am hoping that he won't have to have another MRI done because he wasn't a happy camper with the whole fasting before the MRI and was very woozy from the Versed and anesthesia. OK I am learning way too much about medical terms than I want to ;-) Lily's first physical therapy appointment went well. The PT, Carolyn, gave us more exercises to do with her at home. I didn't realize how strenuous it was for her, after 40 minutes she had had enough and started crying during the exercises but Carolyn wanted to push her a little more. Good thing I'm not the therapist because I was all "I think she's done" when she started crying. I just have to keep telling myself that this is good for her so she doesn't fall behind developmentally. Thanks again everyone for keeping the twins in your prayers!!!
I am hoping and praying that I don't jinx this by sending out this email but...the baptism of Lily and Sammy is on for Sunday, August 30. I will be sending out invitations out later but I just want to make sure you guys save the date. Lily's oncologist gave us the green light to have Lily at the baptism ceremony providing she doesn't get a temperature or anything. Since she was baptized at the hospital already, I spoke to Father Reynold who will be doing Sammy's baptism and he wants Lily to be part of the ceremony since we were intending on them being baptized together and he wants the godparents to be able to be there to witness. I hope you guys can all make it, I know it is short notice so I totally understand if you cannot. I'm still working out the reception to follow the baptism so as soon as we get that finalized I will be sending out the invites.
Great news!!! Lily's blood work from her first 7 days of chemo have come back looking good. Her hemoglobin and hemacrite levels are all good and her platelets level (which the Temodar are supposed to lessen) are better than when she left the hospital last week. Also our case RN, Julene said that Lily is very well hydrated and her potassium all look good. I told her that I have been feeding Lily every chance that I get to fatten her up and keep her strength up so that the chemo doesn't affect her too bad and I feel good that it has helped. She has also gained about .66 pounds since leaving the hospital 5 days ago. We go back to the clinic on Tuesday for more blood draws to make sure Lily can start her 2nd part of the chemo cycle on Wednesday. Hopefully the results will be good so that we can start the next part and the results will be good like the first part of her chemo cycle.
Here I am wearing gloves and a mask mixing Lily's chemo medicine and having to give it to her when she looks all trusting and innocent-eyed at me as I place the chemo in her mouth and slowly give her doses...just seems so wrong!!!! To ease my guilty feelings I have to tell myself that this poison/medicine will help her fight the cancer but I just wish there was some other more humane way to fight this disease!!! I'm just amazed that she can still smile despite all that she has been through! She truly is a fighter!!!
Sammy's Xray results came back and he is normal!!! YIPPEEE!!!! He is scheduled for his MRI in the beginning of August and I am hoping they don't find anything. Lily started her chemo last Wednesday and is reacting pretty good to it, she has only thrown up twice but not alot and her appetite is good and she even looks like she has gained a little weight. She had gained weight in the hospital (6.95 to 7.1 Kg) and the nurses were saying that 'usually their patients lose weight not gain it while in the hospital'. I am just praying that she doesn't get any infections, I feel like I am constantly checking her temperature and breathing a sigh of relief everytime I feel her forehead and she doesn't feel hot.
Sammy had his 4 month appt yesterday and he is above the 95th percentile for his height and weight and 70% for his head circumference! The doctor wants to schedule an MRI for Sammy as soon as possible because of his big jump in head circumference but she says it is only precautionary measures because she thinks the big jump in numbers is pretty proportional to a growth spurt but they just want to be sure. Then as she was examining his legs she noticed that they were disproportionate so she ordered an xray for him which i got done today, to check for hip dysplasia...when it rains it pours!!! At least his umbilical hernia has gone away. Then Danika's eczema has been acting up so i should reschedule her appointment with the dermatologist but Lily goes into the hospital this coming Monday to start chemo treatment. So I just want to focus on that to make sure she gets through the treatments and we learn how to administer the meds when she comes home. Also they will be putting a V.A.D. in her chest because they will have to be testing her quite a bit for blood platelets and other things so they don't want to keep poking her to draw blood. So we will have to learn how to keep it clean and administer heparin to prevent clots. I am hoping she responds well to the chemo treatment and has no infections or complications.
Lily's been home for 5 days now and she is slowly getting better with a few setbacks. She is able to slowly turn her head and is tracking things now but tires easily. The only thing that worries me is that she has been throwing up and I put a call in to the neurosurgeon on call the night of July 4th but he says her throwing up is expected especially what she has been through and as long as she isn't showing signs of dehydration or swelling she should be fine but it is scary nonetheless. We met with the oncologist yesterday and she wants to start chemo treatment on Temodar next week. She will be admitted back into CHOC on Monday and will hopefully only have to stay in the hospital for 4-5 days so they can do an MRI and monitor how her reaction to the chemo drug. If she can tolerate it and her blood count level stays stable they will let us take her home and give her the treatments at home. I am SO SO scared but I know God is with her and will be with her every step of the way...I just have to trust. I will be staying in the hospital with her and Magnus and my dad will be home with Danika and Sammy. I really wish I could clone myself because not only do I worry about Lily, I also worry about Sammy and Danika and how this whole thing is affecting them. I pray that by some miracle Lily will only need one treatment but because of her age and how mild the treatment is I feel that they might need to administer multiple treatments. I know she is strong but it hurts for me to see her go through all this -- no person should have to go through this! Please continue to keep Lily in your prayers especially next week when she starts chemo because she will need all the strength she can muster. We have an appointment with the neurosurgeon on Thursday so he can check Lily's sutures and make sure they are healing well before he signs off on the chemo treatment to start next week - hopefully all will go well. Will update more later.
