We are all DONE!!!!

It's a great day!! Kade did it! She is done with chemo treatments! Hopefully forever. I am so proud of her and in awe of her strength throughout all of this. She is so strong and such a fighter. I can't beleive we are done with treatments! I know it was only 6 treatments and only 6 months but it was the longest 6 months of my life and pretty intense. We got to come home from the hospital last night! Only one night and two days in the hospital. Fastest stay ever!

She is pretty sick and miserable right now and I expect her to be that way for the next week or 2. As hard as it is to be home and do all the care myself it is SO much better. No more nurses waking us up every 4 hours for diaper changes and vitals, no more screaming at the top of her lungs getting her blood pressure, no more being constantly confined to the hospital room and hooked to all the tubes, no more poison being pumped into her little body... We will probably have to go back in to the hospital when her counts go down this weekend, but that will be to make her BETTER and give her the good stuff, not the poison. She will also get her stem cell transplant again this Wednesday. Time for a stinky creamed corn smelling baby for a few days. It goes away pretty quick though but man is it rancid.

The plan for the next month is the usual several lab appts to see how her counts recover, then she'll get an MRI, get her central line removed, do a hearing test, and we will wean her from her feeding tube (so that will probably stay in for a month or so). PRAYING that her MRI is still completely clear of any cancer and remains that way. We will pray so hard for that every time she gets scanned. The MRI isnt scheduled for another 3 weeks though. I cannot wait to get all these tubes out of her and be able to just give her a normal bath without covering the tubes with parafilm and covering her central line with press and seal and tape EVERY time (4 times a day right now after chemo).

I cannot wait to bring her to church with the family, and to the park and the store without worrying she is gonna catch something that could be deadly to her. Only a few more weeks and this will be a reality. I can't believe it. She is my little miracle and she did it. We all did it! We could not have done this without all the support you have all given us. Each and every one of you! I have felt your prayers, your love and support. I am so beyond grateful for all that you have done for us. THANK YOU! People are good and God is good. I have been forever changed by this experience. I hope to always see the good in life and in people and to never take anything for granted.

Life is so fleeting and so precious. I had so many mixed emotions this last week as I learned a friend of mine lost her baby girl due to some major health issues. My heart was so broken for them. Feeling so sad and partly guilty that my little girl is going to make it and she will thrive, yet at the same time feel so excited to be done with these treatments and so happy for her. Such mixed emotions. I don't understand God's plan and why these things happen but I will trust Him. Please pray for that sweet family as well as they are carrying such a heavy burden of greiving for the loss of their child.

Thank you all for taking this journey with me and being so supportive. I will continue to update on Kade's progress going forward but for now this chapter is closed and I could not be more THRILLED.

Psalms 28:7 "The Lord is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoiceth; and with my song will I praise him. "

Hiding in the sink...

Hiding in the window cubby.

... and hiding in the corner behind her bed. Any place she could fit she would hide, then turn and laugh.



Kade has such a strong bond with her Aunt Jadeyn who also had a brain tumor. Tumor buddies!

So close to dodging a bullet...

We were so close! I thought we were actually gonna dodge a bullet this time around and not have to be admitted again for fevers but I was wrong. Here we are in the hospital again for fevers.

Kade has had a pretty good week with her reaction to the chemo last weekend. I kept waiting since Friday night for her to get sick because that is her trend but she never really got bad. She wasn't throwing up a lot and her fevers were low grade, but I could tell she was just punky and not feeling well so after putting it off for two days of very mild symptoms I finally decided to bring her in late last night. It's a good thing I did too because her blood cultures came back positive today and she has a central line infection in one of her lumens. This means she has to be on a another strong IV antibiotic for 14 days. We will probably be able to do it ourselves at home like we did with the ganciclovir though. The doc said most kids get at least one line infection throughout their treatments and it could have been because of  anything.

Kades still been a sweet happy girl despite her feeling under the weather. I don't think she is very happy to be in the hospital, but she is a trooper. We sent Maizyn and Jax to Jackson Hole, Wyoming with my parents for a Glauser family reunion this morning. There will be 99 people thre and they go meet all my cousins. I'm so sad to miss it but glad they get to go. It turned out to be good timing as far as them being gone while we are into the hospital again.





Here she is playing with the box of tissues.

Every. Single. Tissue. She then proceeded to throw them on the floor. I glad she is entertaining herself though! Whatever makes her happy. Silly girl.
Wish us luck for the rest of our stay!

Round 5

Well, We are already home from the hospital! This 5th round of chemo went very well so far. We were only admitted for two days then they trusted us to come home and continue her care here,which include the 4 baths, 4 linen changes, diaper change every 2 hours, and dressing change daily. This only lasts until tomorrow though, then it's just her normal meds and as needed nausea meds. Not too bad. She is doing great so far! No throwing up, a little under the weather as far as being lethargic, but she's picked up right back where she left off and I can't help but think it's because of all the sincere prayers on her behalf. Her counts have not dipped yet, that will most likely happen this weekend and the we'll see if she gets worse, but so far so good and I will take it! She will get her nulasta shot and stem cell rescue tomorrow in the outpatient clinic, which makes her smell awful for a few days... Think creamed corn times 10. But it will help her recover quicker when her counts go down.

Kade's MRI scan came back clear last week as well as her hearing test! All positive news from there. I'm so grateful and have definitely been breathing a huge sigh of relief. The more clear scans she has further out, the better her prognosis.


Not too much else to report except that we only have ONE MORE round of chemo! Hopefully forever! I am so proud of this girl. She is definitely something special, I know God has big plans for her and I have so much faith in her.

Just being goofy with Mommy.

She was so cute playing peekaboo with all the nurses who were having their huddle right outside our door. She's definitely won the hearts of many around here and is so very loved.

100 days

It's been 100 days since Kade was diagnosed with cancer. Wow. 100 days of tests, scans, chemo, frustration, sickness, worry, exhaustion, and heartache. But it has also been 100 days of miracles, relief, learning, faith, changed hearts, gratitude, and hope. It's easy to focus on the bad and the hardships, but I also can't help but think of all the good that has come along with this trial. Kade is my little survivor! God's little warrior. So proud to call her mine.

We got to come home from the hospital last Monday. Yay! We are so happy to be home.

Kade did test positive for the CMV virus which can be pretty serious in immune deficient kids. Usually people with AIDS or an organ transplant get it. The risks are that it can become a disease which can affect your liver, kidneys, lungs, etc... So we are treating her pretty aggressively with twice a day infusions into her port with a medicine called ganciclovir. This is a harsh drug which also causes her counts to go down so we still have to be careful of infections and sickness. They taught us how to do the infusions at home. We are also giving her two shots a day with an anti clotting medicine since she had a clot in one of her ports. More stuff to do for us! We'll take it if it means her being home.

She is so much happier at home. I really do thinking her siblings are her best medicine. She just plays and laughs with them. We are off all her anti nausea meds and she is starting to eat a lot of normal food again! She's lost the strength to walk again but is starting to walk around the furniture so that is a good sign.

After this last scare in the ICU we were left a little nervous to continue with the intense chemo. We have a meeting set up with the care team to discuss all our options and the risks and positives of everything this Thursday. I'll let you know what we decide. We do have to wait for the ganciclovir treatment to be over and her counts to go back up before we can start another round of chemo anyways so I'm not sure what our timeline is yet.

Once again, we are so grateful for all your positive thoughts, energy, and prayers. Miracles are real and God is good. There is no doubt in my mind that He answers our prayers large or small. Please pray that we will make the right decision for her care going forward according to His plan. Love you all!

Not getting better, Not getting worse

Kade is improving as of right now but we're not out of the woods. All of your prayers are working, but we will still continue to need more!! She had an ok night, better than the night before so we are holding on to hope that she is turning a corner. She did spike a fever early this morning and is still pretty miserable as far as pain. They put her on a morphine drip rather than giving breakthrough doses, hopefully that will help. She also got an X-ray of her stomach because its distended and they wanted to rule out constipation since her stool has mostly been watery. Apparently you can have diarrhea and constipation at the same time but it turns out she just has a lot of fluids and gas build up as well as bile. One of her lumens in her port is not pulling back so they think she has a clot and are only using the other one for meds and labs. This clot might also be causing her body to react like it has an infection there, although her blood cultures show that she doesn’t. She is very swollen because of all the fluids they have been pumping her with, they have cut back a little bit on that which should help with her swelling. She is now being treated for fungal medicine as well just to cover their bases. Not major improvements but not doing worse either. Her ANC (white blood cell counts) are still at 0. Since she had her stem cells put back in and a nulasta shot right after her last chemo the oncologists believe her counts should start recovering in the next few days which will help her improve a lot. They will also be able to take a CT scan to find out where the white blood cells are attacking. . Her labs still show that all of her organs are doing fine and are not in any distress. Dr. Geyer (the oncologist) was reassuring saying that he was not overly alarmed by what is happening and he is hopeful that once her counts recover she will start feeling much better. This was nice to hear because I have been so worried. This is scary because she could get worse so quickly, but she is strong and is a fighter. I have no doubt that she will come out on top. Continue to pray for her!! I beleive that God has a plan for this little girl, that has been shown already with all the lives she has touched. She is so brave and I'm so proud of her. Thank you everyone for all your love and support! I have read every message and looked at every like. I love each and every one of you.

Sepsis

Kade is still in the ICU and very sick. She's getting high fevers frequently even with all the antibiotics she's getting. They have ruled out C-diff like I previously thought but she still has pretty bad diarrhea. She is septic however her blood cultures and CSF cultures all continue to come back negative indicating it's not bacterial...yet. Infectious disease came by and said they want to wait for her white blood cell counts to go up a little bit first then do a contrast CT of her abdomen and her brain because that will show where the white blood cells are trying to attack and give them a better idea if how to treat her. She is going to continue to be in broad spectrum antibiotics and is also getting nutrition IV now. Her blood indicates the infection hasn't reached any if her organs yet which is something positive. She's so sick and miserable and it's scary. Please continue to pray that her body will respond to the meds and her counts will recover quickly so that she can fight this and feel better. It's very hard to see her like this.

Small Update

UPDATE - Thanks everyone.The docs are pretty sure Kade has C-dificil which is a nasty GI Infection that makes kids pretty miserable but add her having no immune system and it makes it much worse. It causes very bad diarrhea and can cause vomiting. It's a spore bacteria which means it has a membrane around the bacteria which makes it more resistant to regular antibiotics. She's on 3 of the strongest which should start working soon. They are keeping her overnight one more night in the ICU because she still has a a fever and high heart rates in the 170s 180s. They want to make sure her blood pressures and oxygen levels stay good because if those go out of whack as well then it means her body is starting to be Septic. Pray Pray Pray she comes out of this quickly!! Thank you everyone.

ICU, we meet again...

So we are back in the ICU after a very eventful a long night. We came home from the hospital getting chemo on Tuesday night, then Kade has been pretty nauseous since then but she really got sick on Friday when we came to the clinic for labs. She couldn't keep anything down and was very lethargic. She started getting a fever and labs showed she was neutropenic. (Counts were at zero) so they decided to admit us. Since she has been throwing up so much they wanted to rule out shunt failure so we got a CT scan which showed her ventricles looked good, then they did a shunt tap, meaning theyput a large needle info her shunt site on her head to check pressure and pull some if the CSF (cerebral spinal fluid) to test for infection. Pressures looked good thank goodness and this morning that came back clear!! Good news because it means they ruled out meningitis. They have given her 4 boluses of fluids with still very little and very dark wet diapers. She also has pretty bad diarreah. They're really concerned because she was sooo dehydrated. About 11pm last night Kade spiked another fever up to 103 which caused her HR to go up to the 190s. They called in the high risk nurses from the ICU and had a team of 7 people monitoring her. After giving her IV Tylenol her fever came down a bit but only for about 2-3 hours then her fever spiked again with her being very shaky, vomiting, and really lethargic. They couldn't give her Tylenol again for a few more hours. Her HR was up to 210 and her oxygen started going down at one point so they put her on oxygen for a little while which seemed to help. This was pretty scary at this point. Eventually her oxygen levels improved. They decided to move us down to the ICU to get 1:1 care since our nurse in cancer care was with us the whole time and couldn't get to her other patients. Kade got a blood transfusion and a platelet transfusion as well. These have helped her resting heart rate come down to the 170s. That's still very high. Her fever has stayed around 101-102. So here we are. She's doing a lot better and has turned a corner but they are keeping a close watch because with cancer kids who are immune compromised things can change very fast. I'm tired, she's exhausted. I got about an hour of sleep in the chair holding her. They are still trying to figure out where her infection is and have her on 3 very strong antibiotics. Just pray that her body will respond to the meds and she will start feeling better. I think things are slowly improving. I will do an update when we know more. Love to you all! Pray for my girl so  her little body can fight this nasty  infection.

Round 4, bring it on!

We had such a great week home with Kade before this 4th round of chemo started yesterday. Kade's counts were up and she was feeling great and so happy to be home. We even took her to church last week! It was nice to all be there together as a whole family. I took her to the park and she got to play outside with her siblings lots. It was normal life again and we were all so happy, especially Kade. She started walking again! Just a few steps on her own but were thrilled! I think we were more excited this time around than the first. She hasn't walked in nearly 3 months! She was so proud of herself. She's also been talking up a storm. Mostly babbling, but she is starting to repeat some real words and animal sounds. Is so nice to see her motor skills and cognitive skills improving leaps and bounds. I'm so proud of her.

We are now on Round 4, in the "consolidation phase"(2nd phase). She's getting two different types of chemo over two days rather than 4 over three days. That's 6 different chemo's so far! This phase is different because one of the chemo's (thiotepa) comes out through your skin. So she has to get 4 baths daily, as well as changing her dressing on her Hickman line as well as changing linens 4 times daily. If we don't take these precautions the chemo sits on her skin and can cause blistering and burns. Pretty intense! Kade hates the baths but luckily they're pretty quick. The other chemo makes her a bit nauseous but nothing like the first phase. She's actually been handling it really well so far. The thing I absolutely hate the most about chemo is the steroids (dexamethesone) they give her because it gives her "roid rage" she doesn't sleep well and is so restless, irritable and inconsolable. She probably feels like she's jumping out of her skin because that is how she acts. She hits herself in the head and then right when I think she is calming down again she sits up and pushes me away screaming. Luckily this time around I asked if we could forgo the steroids for day 2 because she is crazy on them and they said yes! Thank goodness. Last night she screamed for about 2 hours rather than the 5 that she has in the past. She fell asleep around 11:30, WAY better than the usual 3:00 or 4:00 am she did the last few rounds.

She will be getting her stem cells back on Tuesday which should help her counts recover since one of the chemo's have a delayed response with her counts going down. This means potentially we could land ourselves in the hospital for fevers again but even longer this time. :( but we also have 4 weeks in between rather than 3. Also the stem cells should counter act, helping her counts recover so hopefully it's not as long of a stay if we need to come in for fevers again when she has  no immune system (neutropenia).

We are also in isolation because Kade has a runny nose. This part isn't fun because we can't go for walks around the floor and are confined to our room, plus the nurses and docs have to suit up every time they come in.

I'm so happy that things are looking up for my little sweetheart and that this round isn't as rough as the previous have been. She's coming back to us and we are loving her silly little personality. She has these nurses wrapped around her little finger. They think she is about the cutest little thing ever. To be honest as much as I hate being in the hospital so much, I do feel like it's my safe place. Everyone here gets it and they're awesome. There isn't judgement or stares. Kade is treated just like any other kid. I know people don't really mean to judge when they see her but that they just don't know what to do or say.  Its uncomfortable for both sides, the pity looks and people being afraid to say anything about her NG tube or scars on her head. I was the same way before. But going through this, one thing I've learned is to just to speak up and talk to people going through a hard time whether it be the death of a loved one, sickness, or anything similar. I like when strangers ask question about Kade and acknowledge the elephant in the room by asking what she's going through or how I'm doing, rather than getting strange looks. I'd rather just tell them her story and what an incredible little girl she is, than have them feel bad for her. I've had little tastes of this over the past week as we've gone out to public places like shopping and to the park. People are always kind and respectful but I guess I realized I don't want people to be afraid to talk to me or even look at me because of what we're going through. :)

There is so much to be grateful for. We're looking forward to all of my family coming up to visit this next weekend and to have my little sister, Jadeyn come home from her mission and get to finally meet Kade! She had a brain tumor before her mission that was benign but she had it removed and so her and Kade have a little connection. Can't wait! Lots of good things to look forward to and remember that we are so blessed.

 Here's some pics from the past week. I posted some of these on Facebook as well but for anyone that missed them or anyone else interested...

Our view from the hospital room... Mt. Rainier!

And the space needle on the other side... Awesome!

Halfway through!

Kade is halfway through her treatment!! Round 3 went a lot better and quicker than the last two. We were in the hospital for 4 days and her nausea wasn't that bad up until recently. We were home for 5 days, then Saturday Kade started feeling feverish which is her trend when her counts go down. She was also not tolerating her feeds and throwing up a lot more. Sunday morning we had an appt for labs but I knew since she had a low grade fever all night we would probably be admitted depending in her ANC (white blood count). Sure enough she was at 0 and I could tell wasn't feeling good at all. We were admitted again yesterday for antibiotics. She also tested positive for rotavirus which is a GI virus so we are in Isolation and she has pretty bad diarrhea. The good news is that she had a blood transfusion and 2 platelet transfusions, and has also been give a lot of fluids and electrolytes as those were also very low.  She was very dehydrated from throwing up so the extra fluids and blood helped her get her color back and feel much better. She's still a little pukey but is overall feeling a bit better. She's also gained some weight back. If she can keep her fevers down below 100 and her blood cultures come back negative for infection, then it should be a short stay of only a few days.

I'm so proud if her for making it halfway through these treatments! It's been a rough and rocky road, but we're over the hump, or I should say mountain!! (Fingers crossed!)
We have 3 more rounds but from what I hear, shouldn't be as tough.

I know this has been a trial for our family but it's brought us closer. I also feel very fortunate and blessed that things are not worse and that this is a rare but treatable cancer with a good prognosis because we removed her whole tumor. I've met and heard about so many children that have it A LOT worse than Kade and it breaks my heart. Kade is expected to come out on top after this which is a HUGE blessing. There was a family here next door during our last cycle of chemo and there were about 20 people in this little boys room for two days. Their little one was dying and they were all there to say goodbye. I don't know the details but I know they were an awesome and very close knit family and it gave me so many mixed emotions. I was so sad. So grateful things are not worse for us but so heartbroken for this other family. I am counting my blessings and choosing gratitude.

This past week Maizyns classroom Mom gave me a gift of a "get well soon" banner that her class made with each of the kids writing a note for her as well as some gift cards. I also was pleasantly surprised to receive a bundle of anonymous cards in the mail from complete strangers, and to have my friend bring me some care packages from other people I don't even know. Not to mention the MANy gifts, kind words, help and love from our friends, family, and loved ones. Beyond touched. People are good. God is good.

All we ask for are continued love and prayers, yet we still continue to receive so much support by way of anonymous gifts, donations, anonymous cards in the  mail, meals, and many prayers and so much love. We are so grateful and always touched.

Normal life?

Sorry I haven't updated this in so long. It has been a very busy few weeks! We were in the hospital for a few days due to fevers and infection, but then came home last Thursday and have been home since. We finally had a normal week! ( minus various Dr. Appts ) There has been so much improvement in our little girl! She is crawling and playing and laughing. We haven't had fevers and have had minimal vomiting! She finally felt good and was her active little busy bee! It has been so great to have her back. It still comes with a lot of round the clock care with her meds and changing her caps and flushing her lines with heparin, also replacing her NG tube on average every other day because she either pukes it out or pulls it out herself... We've become pros. I'm actually considering nursing now. :) But even with all the work it entails, I am so happy to see her doing so well.

Kade also had an MRI done to scan her brain for any new tumors and her scan was clear! Yay! She also hasn't lost any of her hearing yet (which is a side affect of one of the chemotherapy) I'm so glad we are finally having good results and good news coming our way. Such a relief! It has been awesome to see her interact with her siblings like she used to. She loves giving hugs and kisses to everyone and is even starting to say some words again. I'm so proud of her. I can tell her brain thinks she can walk and do all the things she used to but when she tries to her body doesn't cooperate because it's not quite strong enough yet, it's frustrating to her. But I am so proud of her for trying and it's so encouraging that I know she'll be walking again soon. We head back in for Round 3 of Chemo tomorrow morning. This will be our last round of "baby boot camp" chemo (that's what he nurse practitioner called it). So she will be sick for about a week and her counts will go down again which may have us end up in the hospital again. However this is the last round of the super harsh chemo recipe. The next three rounds (4,5,and 6) are 4 weeks apart and we are only admitted for 2 days with only 2 types of chemo which shouldn't be as harsh on her little body. I'm looking at it as this is the last little climb and then we will be over the hill and starting to come down to the finish line. I am amazed how fast this has gone, but also how slow it's gone. I know that doesn't really make sense, but that's kind of the roller coaster we've been on. I know God has been walking this hard path with us and has helped us because as I look back I can't believe how I've been holding it together. It's been a hard two months! I'm so grateful for the friends, family and loved ones helping us along the way. I'm still so humbled by the love and generosity from not only loved ones, but also complete strangers. Thank you everyone. My little Kade is a fighter and I'm so proud of her! Wish us luck with this next round!

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!!

There's no place like home.

We are enjoying every second of being home. It's so nice to have some normalcy for a bit. Kade is doing so much better being in her element at home. She's still very weak but is starting to get her appetite back and laugh and smile at us. She crawled to me yesterday which is huge! We tried to get her to stand and walk again which she took a few steps with help but is really weak. She's doing so good! It's nice to have my baby back! The other kids are also loving being home as a family again.

New Diagnosis...

Sorry to confuse everyone again as I move from Facebook to a blog. This will be a lot easier to navigate since this is going to a lot longer road for us than anticipated. With this diagnosis of Cancer we are in a whole new ballgame. Here is the latest, as soon as Kade recovers from this major brain surgery she had about a week ago, she will then start chemotherapy here in the oncology ward at Seattle Children's. The chemo process will be about a 6 month period with 6 total treatments. She will be admitted for 4-5 days each treatment then be able to come home for 3-4 weeks in between. We, along with the oncologists are hopeful that she will have a full recovery.

Right now Kade is recovering remarkably well from her surgery. She is sensitive to a lot of stimulation and noise as she is still in a lot of pain. The doctors are hoping to take her CSF (cerebral spinal fluid) drain out tonight as her body is handling the absorption well. She had another MRI this morning determining that things are looking good. This means we might be able to go home tomorrow or Saturday depending on how she is handling things without her drain.  Then we will come back sometime late next week to start the chemo process. That will be another post since there is SO much information and we are kind of on overload. Right now we are trying to focus on things one step at a time.

Kade is giving her little stink eye to some of the nurses and pushes their hands away, which shows some of her feisty little personality. It's nice to see and the doctors are encouraged by her attitude as well. The oncologist said she is just the type that beats this because she's been so resilient with recovery.

We are heartbroken and a little shocked by the news but are taking things daily as they come and trying to keep a positive outlook as that will be the best thing we can give her right now. No doubt she still has many angels watching out for her and we still feel we have seen so many miracles throughout this past week.

We are still so grateful and impressed by her care given at Children's, with the oncology team now taking over, everyone is amazing. We are glad to be where we are as this is the best place possible for her.

We feel inadequate but also very appreciative of all the meals, letters, care packages, phone calls, donations, notes, and prayers offered on her behalf. Please keep the prayers coming as we will definitely need them in the coming months.