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!