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.