Shunt and Chemo Cycle #2

What a week! We got to come home last Sunday for Easter dinner which was great, but Kade was still not feeling very good. She was miserable and in a lot of pain. Since this was my first round of Chemo I had no idea if this was the normal or not. She wasn't even holding her head up and was very weak. For the two days I was able to be home it was hard because she was just getting worse.

We had a clinic appt on Wednesday with Dr. Guyer, her Oncologist. Her counts were fine and he was gearing up to get her ready for round two of chemo to start on Friday. He asked me if she was happy and playful and energetic at home... um, NO not at all. She was still throwing up at least once a day and 3 times that morning. In fact it was a very hard morning because Kade was so lethargic and so sick. She threw up in the car while I was driving her to the doctor and I felt so bad cuz I was by myself and I couldn't pull over but just had to watch her vomit all over herself in the rear view mirror. We got her all cleaned up but this is when I finally had a breakdown. I couldn't see her decline more and more for 6 months! It was hard. So the doctor was a little concerned as well. He wanted me to get an MRI, well of course that day the MRI machine was down. So I went home, she was still vomitting. We called the doc a few hours later and they told us to go to the ER and ask them for an MRI. Fast forward a few hours and the Neurosurgeon was rushing into our room in the ER after reviewing her MRI and was surprised to find Kade smiling and interacting let a lone being awake. Her ventricles in her brain were huge. He said he was expecting her to be unresponsive and comatose. Well, she definitely needed a shunt. Which is a valve put in her brain to stabilize the pressure of the CSF ( Cerebral Spinal Fluid ). It is attached to a catheter to drain the fluid down to her the outside of her stomach where there is also fluid so the body can absorb it. So lucky for us Dr. Ellenbogen who did the tumor resection was the Doc on call. He came in and they started surgery around 12:00 am. Surgery went perfectly. They had to cut her head open on the opposite side to put the shunt in. I was sad about this because her other incision was healing sooo nicely. But at least they are on her head and she will have hair covering them someday. The other thing about a shunt is that it is usually life long. This is because it is hard to tell how much the person is absorbing themselves or the shunt is helping to drain. It is also very likely to fail and she will have to have the valve or the entire thing replaced at least a few times in her life. This made me sad that she will have to deal with this, but I know it is helping her feel SO much better. I also know that technology is amazing and they might come up with something better soon. Here's to hoping!

She's been recovering well except has had a lot of twitching which led to an EEG. they found there was no seizure activity but she is at risk for developing it because she's had major brain operations. We've been on the Recovery floor, then they moved us up to the Heme / Onc to start chemo. She's still been really nauseous even before chemo started but this is probably just residual from her hydrocephalus (brain swelling). She has shown HUGE improvement in her strength though. I put her down in the crib and she was so mad she flipped over and got on all fours trying to stand up and climb out. Before this she hadn't lifted her head in weeks so I was thrilled. She's been holding her head up and being pretty active. She is also starting to talk again! Saying Mamma and Booba and na no. This made me so happy to see her actual personality come back. The nurses have told me that it does get better. The kids are sick from the chemo usually for a week then start feeling better and acting like themselves. This made me very glad that it wasn't going to be so hard for the next 5 months. I was feeling pretty defeated. Her right side is still very weak but the Neurologists said to give it time and she should make a good recovery.

Round 2 of chemo started yesterday and we should be here for a longer stay this time because they want us to wait until her counts start to go back up, I guess its harder for the body to recover the 2nd time. So we'll be in the hospital at least a week, maybe 2. She's already been really sick this time around. My sweet Mom and sister took the night shift for me last night and it was a rough night for them and her. I felt bad I couldn't be here for her to comfort her, but was soooo grateful to go home and get a good nights sleep. My 2 sisters, Lindsey and Kailey came up from Utah yesterday to help out for this cycle. I am so thankful for such an awesome supportive family.

It's been an emotional roller coaster, but we're surviving and making it through one step at a time with a lot of support. It's nice to have my other kids around so I can see them almost daily and so we can have a little bit of a routine. Clay's been a champ running the show at home. Even though we're not all together and that part is hard, I sure do love my people. Kade lights up when they come visit and laughs when we Facetime or I show her their pictures on my phone. So cute. I also feel the prayers of comfort and especially STRENGTH this week as I have not had much sleep but have been making it through. God has blessed me in this way.

Thank you for your continued love and prayers. I've had some hard days and its been comforting to know I have so many that got my back. XO

Hospital, fever, blood counts, and the airport

I'm finding that a new adventure happens everyday. On Monday, we had a clinic appt and noticed that Kade was a bit shaky and not feeling well, found out through her blood counts that her ANC (white blood cell) counts were down to 0. I also took Clay to the airport that day to fly o AZ to pick up the kids. Early Tuesday morning I woke up around 4:30 and Kade had spiked a fever and since she was Nutripenic (low white blood cells / no immune system ) we went to the ER. We were admitted on Tuesday morning so that they could take blood cultures and give her antibiotics. Since this was a little bit expected, it hasn't been that big of deal to be here. The good news is that her counts started going up today and she hasn't had any fevers, but I also was told we would be discharged once this happened. Well, no such luck. Because she is doing good and her counts are on the rise, they want to keep us here so that they can put a catheter into a vein on her groin so that they can take the stem cells from her blood while they are on the rise. This is another procedure done in the operating room and so we get to stay another few days post op. Looks like we'll be hanging out in the hospital until Monday, go home for a few days, then come back next Saturday for round two. I was a little bummed out when I found out we had to stay here through Easter.

Meanwhile, Clay was down in AZ picking up the kiddos. He spent an extra day there to play with his brothers and parents, then we were hoping he would come home on Wednesday. Well, he was flying stand-by because my sweet aunt let us use some of her buddy passes since she works for the airline. There were hardly any flights with open seats on Wednesday but Clay was anxious to get home and decided to chance it. He was at the airport for over 12 hours, hoping to get on the next flight... no such luck. The sad part is that Maizyn got food poisoning and was sooo soo sick the whole time they were waiting. I felt so helpless and felt so bad that I couldn't be there to take care of her. Clay was such a champ though and took great care of her. He met several other people who were waiting to fly standby and they became instant friends. One lady really helped Maizyn as she had to go in the women's bathroom an change her clothes several times. Turns out they didn't even get on a flight yesterday but then went back to his brothers house to sleep and finally made it on the early flight this morning. They are home!
But...I'm stuck in the hospital. I'm so sad. He's worried about bringing them because we don't know for sure if Maizyn was sick or had food poisoning so I don't even get to see them until tomorrow. 2.5 weeks is WAY too long to be without your babies. I miss them so much. I'm so glad Clay is such a good Dad and that they are such good kids though, taking everything one step at a time. I love my family.

My sweet Mother has been taking a lot of time off work to come keep me company at the hospital and give me breaks. I am so grateful for her and her willingness to help out so much. She has been a rock through all of this and I honestly don't know what I would do without her. I'm so glad we live close to her and close to the hospital.

The upside of being in the hospital so often is that the nurses are doing all the care taking for my baby while I just hold her and love on her. I'm taking advantage of that part.

I've started writing in my journal and making a list of all the little miracles that have happened, many too personal to share, and I am awestruck. God has blessed me so much. As Easter approaches this weekend and I think about the real reason for it and the sacrifice of my Savior I am amazed. There is a Mormon video going around called "Because of Him", it's touched me to the core as I think "Because of Him" I can endure this trial and feel comforted by his love and understanding of what I'm going through. Because of Him I am given strength to be here for my little girl and help her overcome this hardship as well. I love Springtime and the re-birth of life and the warmth in peace in the air. Easter is one of my favorite Holiday's. I wish you all the best.

Here is the link to the "Mormon Message"

https://www.lds.org/youth/video/because-of-him?lang=eng

Post Chemo.

Kade is slowly getting better everyday. The first few days at home were hard. Really hard. She was inconsolable. She was sick and therefore didn't even want to nurse. (Yes, I'm still nursing - we were in the process of weaning when this all happened) We gave her the prescribed anti-nausea meds and they seemed to help a little bit, but not enough. We had our first clinic appointment on Friday and our Nurse Practitioner told me to get her off the Steroid, she would be a lot happier. Apparently it makes her crazy moody. She also gave me a little bit different regimen with her medications, adding Lorazapan as one that she should take more frequently than the others. (We have about 8 prescriptions) The Lorazapan has helped so much.

She is doing a little better each day. She's got her ups and downs but is hanging in there. It was sad the first day we got home and she realized we were at home but her feeding tube and Hickman lines were still in. She kept trying to pull them out and I could tell was frustrated and confused as to why she had lines in when she wasn't in the hospital. I felt so bad. She's gotten used to them though and so have we. Clay and I have become pros with her feeds and her medicines. We also have to give her an injection every day (GCSF shot) which is supposed to help her Stem Cells release from the bone marrow and they are going to collect it before we go in for our next round of Chemo. Clay's really good at cleaning her lumens on her Hickman line and giving her the shot so I let him do it most of the time. At our clinic appointment on Friday we were told to expect Kade to get a fever this coming week as there is a 90% chance she'll get one and have to go into the ER. This is not anything we do wrong but her blood counts are going to plummet and her body wont even be able to fight its own bacteria which is why fevers are so common. I guess we'll see. She's been clear so far. 

One of our dear friends had their house cleaner come in and clean for us, which was awesome! We are so grateful. I feel like I'm nesting when I was pregnant because I just want to clean everything and everything to be perfect for Kade. I actually ordered an automatic Purell dispenser for anyone that walks in my house. :) Don't be offended if you come over and I make you germ free. It's for my little girl. I also ordered some doTERRA essential oils which are supposed to work wonders in many different ways. I'm excited to start using them..

Maizyn and Jax are still in AZ. We miss them SOOO much! They come home on Tuesday. They have been having the best time with their cousins, swimming in the pool and playing all day everyday. We've been facetiming with them and Kade gets so happy when she sees them. I know when they get home she will perk right up and slowly come back into herself. And by the time she's feeling good, she'll go in for round 2! Heart breaking! We actually are already scheduled for April 26th for round 2. 

I'm going to just enjoy these next few weeks and pray we don't have to be admitted for an infection or fever. The doctors said if she gets a fever we will most likely be admitted for 1-2 weeks to get antibiotics. I think we might just have to move right in for the next 6 months. But really, I am so happy that we are so close to Children's as we can actually come home in between treatments. They don't want us being further than an hour from the hospital until Chemo is completely done and her scans are all clear. We are counting our blessings that we live so close. 

I have to say that as hard as this has been, it's not as bad as I expected (yet). We're all hanging in there and trying to get on with normal life which is really nice. Fingers crossed and prayers that Miss Kade won't get an infection. Thanks again everyone. Love to all!

The first round of Chemo

Well, we are getting discharged from the Cancer care unit this evening. It's been quite an experience. My poor baby has been so sick. The first time the nurses came with the first dose of chemo, they had to wear what looked like Hazmat suits. This should tell you how toxic this stuff is. I cried. We have to wear gloves just to change her diaper. No wonder this kills cancer and completely kills your immune system. They have been giving her about 5 different types of chemo over the course of three days. I just keep wishing I could be the sick one, not her. When we go home she will still have her NG tube( feeding tube ) and her Hickman line ( the catheter put into her chest for her chemo and others meds and blood draws. ) We've been trained on homecare for these as we have to give her 5 feedings  a day and flush her Hickman lumens once a day. We also will have to give her a shot everyday for to help with her blood counts. SO SO so much information. The first day we got our "training"  I was so overwhelmed with all of it, but things have gotten better and I feel a lot more confident in all the things to look for when caring for her. It's going to be exhausting but will also be our new normal so I'm sure I'll get used to it. Children's has been great and we love all the nurses and docs here. We've also met some of the families. One family that was next door to us was a young couple with a 2 year old little girl. They've been going through this since December and had a lot of good advice for us. Basically telling us not to look too much at the numbers but to look at how Kade individually is going to fight this. Also saying that she will surprise us with how well she handles things. It was comforting to talk to them. I know I say this every post but it's true, I continue to be amazed by our support group. We have the best friends and family surrounding us and I know I couldn't handle this without all of you. There are angels among us, on both sides. I'm so grateful to my Heavenly Father for sending comfort in every form. I pray that he eases my little girls burden even more so.

The Ups and the Downs

We have had so many emotions since finding out that our darling girl has cancer, and she's also had lots of ups and downs this past week as well. We had a wonderful week enjoying the whole family at home and having a bit of a normal life. It's amazing to realize what a wonderful life you have when something like this happens to you. Normal life is good and we all take it for granted so much, this had truly made me count my blessings. Kade has had her good days and her bad days at home. There were moments when she was laughing and smiling all day long and even crawling around playing with her brother and sister. It's amazing to see her little personality come back to us more and more and has made us so happy. Then there are days like today where all she wants to do is be held by Mom and only Mom. Yes, I'm exhausted physically, mentally and emotionally but am trying to recharge and get ready for chemo tomorrow.

We went to the oncology clinic yesterday where we learned a little bit more about what to expect. It was hard to sit in the waiting room with other kids that were in the midst of their treatments and see how sick they were. Reality sure hit hard. It scared me and made me sad to realize a little more if what we're up against. But I also feel reassured once again by the oncologists and that they are hopeful for Kade's outcome. He said the odds are in our favor that  he hopes she will only have to go through this 6 month treatment and will come out on top. Just gotta gear up for a really tough 6 months.

We go in tomorrow for her first round. She will go into the operating room first and will get her port put in her chest which will stay in throughout these 6 months. They will give her chemo, blood transfusions, do blood draws ans any other medicine through this port which is great because then they don't have to do an IV every time. They're also going to do a spinal tap which will serve two purposes, to test for any cancer cells in the spinal fluid, and to test the pressure of the spinal fluid. She has a lot of fluid built up on her head next to the incision from them taking the brain drain out when we were discharged. They say it looks a lot worse than it is and since it is between the skull and the skin, it takes a lot longer for the body to absorb it, but they will test the pressure to see if a shunt is still needed. We are hoping its not. They will also be taking the stitches out of her incision, which is healing really nicely. Kade will also be getting a feeding tube put in and she'll have it the whole 6 months, even at home. She is so skinny to begin with they are worried about her nutrition. This actually makes me feel a little better because this girl does not eat and it makes her Momma worry.

We sent Jaxon and Maizyn to Arizona yesterday for 10 days to spend time with their cousins. I'm really sad to have them gone for so long, especially Jax because he's still pretty young. But we know they are in good hands and will be having the time of their lives. It will be good for them to have a little bit of consistency and normalcy, plus it gives us some peace knowing they will be with one family and be well taken care of while we're in the hospital for these next 5 days with Kade.

It's been such a whirlwind of emotions. It's hard to know what's gonna happen down the road but we are taking it one step at a time and are still in awe at the support and love people have showered us with. So many people have come out the woodwork unexpectedly and it has been really neat to see so many pulling for us. This first round of chemo is going to be the hardest and we're going to need a lot of extra prayers still. Thank you all!!