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!