Well it's been
about a month since the last time I have posted so here goes....


We have
had the great pleasure of having Will’s amazing sister out here supporting us
for the past 3 weeks. My father has also been here the past week and even though
it is hard to say even a temporary goodbye to him, as he is coming to Hawaii
with us, we are welcoming more of Will’s family this next week… Grandma, Grandpa
and Uncle…Horray….
Our days have been very consuming but at the same time I
don't feel like we are running in circles as much as we use to. Gaining some
road in many different areas at least. Our main focus over the last month has
been getting Kiwi's nutritional and GI status back to optimal. Things are never
as easy as you expect or want. In spite of us pushing to get her G-tube in it
kept getting pushed off as we bounced around from each different specialty
doctor and their opinion and schedule. Again getting little reminders to breath
and trust. We were planning on going to Hawaii the end of June but just didn't
want to be there while Kiwi was still on all her IV meds and still having issues
with vomiting and low intake. So we focused on the G-tube. That finally got put
in on the 27th. It was hard to take her back to the hospital. She hadn't been
there in so long and she had some anxiety about it, with the addition of not
being able to nurse because of the surgery. I also had to stay away for the rest
of that day until the next morning which I have to say was really difficult. I
kept sitting there waiting to get a call to go back up to the hospital (I was at
a facility about a block away that has rooms for family members who have children
in the hospital). My heart ached wanting to be there to support her as she first
recovered from surgery and noticed this new thing in her body. I wanted to be
there so bad it hurt. But she couldn't nurse and we wanted to avoid having one
of her extreme everlasting uncontrollable breakdowns in the event that she had
access to nanas and can't have them. So she spent the night with papa with some
help from Aunti Jessi and Fefe. After the initial 24 hours after surgery when
she began to feel a bit better physically things got a little wild with
communication between us and all the different new docs and caregivers. See our
oncologist was out of town and since this was more of a GI issue we dealt with
different people. Our hospital/care facility is somewhat small and intimate and
that is nice because Kiwi's oncologist really knows us and respects us. We need
that because we are very proactive and opinionated when it comes to Kiwi's
health.  We spent a lot of time
trying to express that to our new docs. Long story short they wanted to push
commercial made formula feeds really fast even though she hadn't ate anything
(except nursing) in like two months and she just had surgery.  We
  were unprepared for this as we expected we would be able to deal with getting
  her nutrition gradually back from home. We didn’t know they were going to be so
  aggressive about this so soon. We have somewhat different views when it comes
  to what is good nutrition and what we feel kiwi needs in her unique situation.
She ended up vomiting up all the formula they pumped into her no matter what
rate they pumped it. We just wanted to get her home. They did not seem to think
any of our ideas or what we wanted to do was acceptable during our time in the
  hospital. But we ended up working through everything and feeling a little bit
  more heard. We also found a more accommodating doctor, and another great individual to help with communication, which really helped. And
  once we got Kiwi home we could do research and really take a step back and see
  what was going to work best for Kiwi to get her digestion back working again
  without over stressing her. It is a very day by day thing depending on what her
  intake is on her own. It is moving forward and improving all the
time.


   We are hoping to 
go to Hawaii with Kiwi the end of July or beginning of August. We are very 
excited for this. We know this will be very healing for our family. Kiwi got
an amazing package of super cute, comfortable, organic clothing from Kate Quinn
  Organics. We were so excited about this. I have
  bought cloths for the kids from Kate Quinn since before kiwi was born and I
  just love their stuff. Very long lasting and durable... Thank you Kate Quinn...

www.katequinnorganics.com

 

Besides all the
  technical stuff Kiwi is doing really well. I mean we still have our good and
  bad days but we see daily improvement in many areas of her health and well
being. We know that the next month or so will be bringing many positive but also
  sometimes challenging and releasing changes to many aspects of our lives. I am
  excited and scared at the same time. Stepping into the new and unknown with my
  family may feel like stepping into the dark but at the same time into the
  light. Also with the hint of normalcy peaking its way in to give us a bit of
  our sanity back. Chaos evaporating into balanced integration. Breath Breath
  trust believe love surrender peace gratitude Breath Breath…….


Please continue to send Kiwi healing positive thoughts and
energy. We will continue to update as possible and appropriate. Thank you all
for the amazing support through this time.

Well I have been waiting to post just because I was hoping I
  would have more information about the new turn of events lately. It has been
  such a long two weeks. It seems like I can never let my guard down or relax, as
  soon as I do I am so far behind that everyone is super stressed out. Sorry a
  little ranting… Anyways, so where to start, Kiwi had a bit of a harder recovery
  with this past round. She ended up running a fever which remained high for a
  few days. There wasn’t any bacteria in her blood cultures so we are not sure
what the fever was from. It just really seemed to take her out. Her counts still
  came up fairly good and even though we wanted to go home on Monday we ended up
  waiting it out and going home after her MRI on Wednesday. We also had a care
  conference with her doc to discuss where things were going after the next
round, which was to be her last. Well everything that we discussed in the
conference was pretty much thrown out because of the results of the MRI. It is
somewhat inconclusive to exactly what is going on. Since starting chemo the
residual tumors and nodules have shrunk and or stayed stable with each MRI.  But with the last one, even though
there was no growth, two of the nodules showed enhancement. Which in their world
usually means cancer cells growing; it is their best explanation even though it
could be a few other things. This is after the 2nd round of high dose chemo. So
with this, the only way to really know what is happening is to look under a
  microscope, and it is not in Kiwi's best interest to do a biopsy. With the
  oncologist assuming this is new cancer cells he does not want to put her
  through another high dose of chemo or radiation. He is offering what he calls a
  more ‘maintenance treatment plan’ with lower dose chemo’s and a angiogenesis blocker drug to slow down any blood vessels that
sustain the tumors. They are still compiling the complete plan they will suggest
for Kiwi. For us this has been, I don't know, I guess just overwhelming in one
sense and not inspiring, but definitely getting us moving in another sense. It
seems as soon as we get a routine down something shifts. We are trying to see
this as an opportunity to really kick it up a notch on our end and add some
things we have been waiting for until after she recovered from chemo and would
her overall intake would improve. It was a hard decision to make but we have
decided to place a G-tube (feeding) next week. Her GI system really got hit hard
and she has still not eaten anything since before the last round. We want to get
her off this synthetic intravenous nutrition (TPN) and start getting her gut
healed and immerse her in real nutrition and superfoods. We also have a few
other things in the works, but are waiting for them to come together before we
really share. Will and I have also taken this opportunity to work on our
relationship and our family dynamic, I am sure everyone can imagine that
something like this can take a toll on all of that. We feel putting more
emphasis on this will be a huge contribution to Kiwi’s healing. We have been
working deeply towards cellular level healing, trying to break into the
unconsciousness of this all. We feel this is super important as well. Some
systems like The Healing Codes or The Tapping Solution/EFT are helping us
facilitate these two aspects. We have already felt a difference since starting.



Ah…  besides that Kiwi and I also had a trip
to the ER on Saturday, by ambulance. Unfortunately, Will was out of town that
night. Around 9:00 pm Kiwi started having partial complex body seizures similar
to what she has had in the past. Except this time they kept happening even with
an oral dose of ativan, she had about 8 or so siezures in an hour and a half
period. We called an ambulance and got a ride up to the ER, it made for some
good mother daughter bonding. She didn't have any seizures after getting into
the ambulance and actually feel asleep despite the bumpiness. She is so sweet
and I love holding her, she got to sit on my lap on the way up of course. She
did great once up there but with an IV dose of ativan she didn't sleep until
4:30 am. Ativan causes paradoxical effects when it comes to sleeping for Kiwi.
Poor thing, she finally caught up on her sleep the next morning. I wasn’t so
fortunate, just too much on my mind.  Not sure what caused the seizures but
could be irritation in the brain. Her anti-seizure meds were increased again and
now is at such a high dose we have to monitor toxicity.  AHHHH.
 I want to melt all the hard things
away and just have my little shinning star start feeling good and being a little
girl. I felt like I have been in a little borderline train wreck status lately.
Spending lots of late nights researching and fine tuning what we want to start
to add to Kiwi’s regiment. Then early morning with the kids, been trying to
catch up but it has felt impossible.  Just continuing to look within and find
the faith and trust.


We are also, possibly, getting a chance to go to Hawaii through
Make a Wish Foundation... Kiwi was born on Kauai and we talk to her about it and
showed her some pictures, she said she would like to go there so we will see
what will come out of meeting with the wish granters, because she also said she
wanted a dog but that is in no way possible in our situation right now. We have
more family coming in throughout the next month which is such a relief we might
just get some down time with everyone.


Here are links to some of the things we have come across in our
searching for Kiwi’s options….


An amazing story and little boy who had the same cancer Kiwi has…
http://www.cashhydefoundation.com/index.php


http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.dailymail.co.uk%2Fhealth%2Farticle-1383240%2FBoy-brain-cancer-cured-secretly-fed-medical-marijuana-father.html&h=b1ae6


Another dad who has taken things into his own hands when it comes
to nutrition and his daughter…


http://nourishingachildwithcancer.blogspot.com/


This is the clinic that will be supporting us in getting Kiwi the
maximum nutritional and herbal support……


http://mederifoundation.org


We have really been into cellular healing and quantum healing,
here are some basics to techniques to tap into those…..


www.thetappingsolution.com


http://thehealingcodes.com/


We have had a few people make videos for Kiwi and one young lady
which I have mentioned before is doing a really great project for Kiwi. Please
check it out and contribute.


http://www.youtube.com/watch?v=RbrTESuQp7Q&feature=related.



If you want to see the other videos here are some
links.


http://www.youtube.com/watch?v=xrem5ZsV8l4


http://www.youtube.com/watch?v=BdCBaMOJZM0


http://www.youtube.com/watch?v=9jUryda90YU


http://www.youtube.com/watch?v=uYSCVz26V5E


http://www.youtube.com/watch?v=76zMjGhX6f4


Thank you to all these very thoughtful supporters.



And thank you to everyone that has offered such generous support.


  

Kiwi has finished with her 5th round of chemo with stem cell
  rescue, she is doing well. A lot of vomiting this round but her spirits are
  still showing through. We are still in the hospital, she has not shown any
  signs of fever but we decided that we would kinda hang our here because of her
  history of having a really hard time as soon as her counts started to drop. We
  are probably just going to stay until her counts come back up, give her some
  good rest and attention without us having to be distracted by managing at home
  with the constant on call doctor phone calls and trips up to clinic when she
  feels so icky and possible late night trip to the er if she has any sign of
  fever. We should also get another MRI while we are here maybe this week or the
beginning of next week. We had an amazing almost two weeks home before this round. She is getting so much better with her
  mobility and strength. I think keeping up with little brother has inspired her
to be more active. He is a force that cannot be stopped, much like his father.

Thank you again for all the support and prayers...
We have been
continuing to do much soul work and research in the best plan in supporting Kiwi
hoping to share what we have come up with when we feel more confident about it
and it is more solid.......

Gosh it seems as though it has been like a month since I posted.
Kiwi got through chemo and the stem cell infusion really well. I have to say that it was probably the best she had done with any of the rounds.  The baths went suprisingly well too, I mean they were somewhat annoying and invasive at 3 am but Kiwi did great and it was actually a bit nice to let the skin that is always under her dressing have a chance to be exposed. It is a little sad though, because every time we change her dressing she talks about her other nana that is always covered up by her dressing, so she had some time to feel like both her nanas were free! Kiwi did have a small body seizure right at the start of the stem cell infusion which was scary, but it only lasted about a minute and everything seemed fine afterwards. No one’s really sure what the cause was, just like with the other sporadic ones she seems to have. Thankfully she hasn't had any more seizure activity since. We also had an MRI on Monday, we wanted to get it done while in the hospital to prevent us from coming back in the next few days. It took a little longer for the results but it showed that there were no real changes from the previous one. It is hard to tell what is going on. It is great that nothing is growing or spreading, we are not sure if what is left is dead tissue or active cells. Our oncologist believes it is good that we have changed chemo drugs when we did.  We were able to go home the next day, Tuesday, knowing we would be back to clinic for either platelet or red blood cell transfusion on Thursday. She seemed to be doing very well, appetite was way down to basically nursing but she wasn't really throwing up until Tuesday night, but the increase was not for the reason we had thought. It actually turned out to be a very wild night. Here is the story, since Kiwi has been at borderline weights and we know that her appetite decreases and her vomiting increases with the chemo, she started on a 12 hour TPN and lipids, or intravenous nutrition, to support her through her down time after chemo. We would be doing this at home again and already had been trained on how to prepare this and set up the pump etc... We have been doing a lot of Kiwi's I.V. care at home since the clinical trial and we have a big comfort level managing the I.V. meds, pumps, etc… It is actually much easier then forcing all the meds down orally. The I.V. meds and supplies were delivered that night after we arrived home on Tuesday and we were planning on hooking her up around 8 just like in the hospital after a few of her scheduled I.V. meds. We had noticed that the bag looked a bit smaller than the ones from a few weeks ago but it was hard to tell if it was just a different shape or not, and everything on the bag looked to be correct except the taper and infusion time, but the paper work was correct and we have had issues with the home infusion doing things differently than the hospital before. After talking to the pharmacist we decided to do the taper that was in the hospital and we felt comfortable knowing that they are aware of what Kiwi needs to be on. Shortly after we hooked her up we noticed her vomiting getting worse. We figured it was her counts dropping. Something just felt off to me, I couldn’t shake the feeling. Kiwi tried going to sleep and I continued to feel really strange, like there was something wrong, I checked her and the pump, and it showed as if everything was right. I just felt really strange couldn’t relax almost like the molecules of my body were changing, I can’t explain it but it was causing me a lot of anxiety. She woke up a bit later and really started vomiting and what was really strange was she was extremely thirsty. She hasn’t been thirsty like that since the antineoplastons. I had this feeling we should check her blood sugar but we really didn’t want to poke her if we didn’t have to. We were also in communication with our oncologist because she wasn’t able to keep her anti-seizure med down. It just got worse and worse with vomiting and thirst and she was shaking and trembling just really beginning to act strange. We checked her blood sugar and it read 'high'!! We checked it again and it still registered 'high' which meant that it was over 600!!! I started to freak a bit, I took her pump out and it was still showing the correct information, but then I decided to look at the bag and it was like 2 thirds gone or more. That was not right it had only been a little over 3 hours, it is suppose to last 12. I immediately thought there was something wrong with the pump and Will called the doctor again. This was almost 12:30 am now.  I figured out how to decrease the rate on the pump but it still seemed off so we switched pumps and did it at a much more decreased rate, hoping that slowing this down would buy us some time. Our oncologist wanted us to call an ambulance to go to the ER because of the potassium and etc in the TPN, it could seriously affect her heart. We also just couldn’t stop the pump immediately because it would cause her blood sugar to drop drastically.  Kiwi started to show some improvements with the pump being slower but was still really out of it.  She was definitely intimidated by the ambulance ride. They were actually firefighters in an ambulance because of the way that our area works, they have separate ambulances and we had to drive and meet with the paramedics to make sure that it was safe enough to have the firefighters transport us up to the hospital. She got to sit in my lap strapped and papa followed in the van. Everyone was really sweet to little Kiwi. Papa also ended up getting pulled over because he was too close to the ambulance. He was let off with a warning. Only about 12 hours from discharge we were back at the hospital. We happened to have the same ER doctor that first saw Kiwi back in August when we came in for the hand, he was very nice to us. We were the only ones there, it was 3 am by the time we got there. Kiwi's glucose had improved and all her other electrolytes were decent and so she got some fluids and IV anti-seizure and got to go home. In bed by 6 am - ahhh. What a fiasco, a definitely unneeded one too. The whole night was very surreal and full of some valuable lessons for all of us. We had a home health nurse come out the next day to draw blood and try to determine what had happened. Come to find out we were sent a concentrated bag of TPN, there was no 600+ml of saline dilution. So Kiwi was getting concentrated doses. We are still in the process of figuring out how this happened. It was very scary for us and we were just really happy Kiwi was home and not harmed by this. She did really well on Wednesday and Thursday during the day. We went in and got platelets on Thursday at the clinic and were scheduled to come back on Friday for red blood cells but Kiwi began to run a temp early Friday morning, like 3 am. She also hadn’t been able to keep her anti-seizure meds down, but it was the only time she was vomiting so we had been on the phone with the on-call neurologist to make sure she could wait until morning to get an I.V. dose, this was at the beginning of the night. Well, with the fever reaching the magic number of 101.5 and low low counts we were once again headed to the ER at around 4 am this time. She started to feel really funky with the fever and the vomiting and diarrhea really increased. We ended up being admitted for IV antibiotics. It has gotten progressively better though and she was up and out of bed today a lot more. Her counts seem to be coming up slowly also. She has really been complaining about her belly hurting and has had blood in her stools and occasionally in her vomit. Her GI doctor thinks it is just irritation all through her system from the chemo. Hopefully when she feels better we can get her to drink some things to help that heal faster, for right now she just wants to nurse, she is not even interested in talking about food.

Kiwi’s little friend is here too and keeps wanting to say hi to her. Kiwi still has low counts and so it has been mostly communication through papa, but today she come to our door and said hi and wanted to give kiwi some tattoos. Kiwi is so shy though, it is so super cute to see the two together.                

We are hoping to be out of here soon, waiting for her counts to come up and just try to manage her gut and eating issues. 

Please continue to hold us in your thoughts and prayers.

This continues to be such a learning journey for us. We are growing and changing so much as individuals and a family. Small miracles and I will take what I can, waiting for the big one to be revealed to us. Thank you divine…

We appreciate all the support from everybody. 

 

We are just arriving at the hospital today….

I know we were scheduled to start chemo last Friday but Kiwi’s platelets had not stabilized yet and so we needed to wait and have them come up on their own before starting. The week was really busy otherwise though. We had Faun’s big one year old birthday and at the same time that my father was leaving from his five week visitL… Will’s parents were in for a weekend visit and my brother was arriving for a two week visit. It was a bit crazy. I was really trying to utilize my father’s handymanness and extra help before he left, he fixed my dining room chairs and table and put child safety locks on our cupboards little things that we needed done but never would have time to do. We made an unexpected trip to the ER on Monday night, here’s why. On Sunday morning Kiwi woke up having partial facial seizures on and off for about an hour and a half. We gave her an extra dose of anti-seizure med and it didn’t seem to come back. But the following afternoon Kiwi started saying she felt icky which is usually what she does when she feels like she is going to have her vomit for the day but after throwing up she didn’t feel better as usual. It continued to get worse and she continued to vomit. She also was acting very lethargic and spacey saying her head hurt. I really began to worry when it progressively got worse where she couldn’t even keep her eyes open. After talking with the on call doctor which thankfully was our doctor this time… We headed to the ER, after a few hours of being there she woke up while they examined her. The ER doc said her ear looked red and could be infected, so we put ear drops in and waited to see if she improved. She did seem to be a bit perkier with the nap and ear drops so we were sent home without having to do a ct scan to look for possible increased cranial pressure.

The plan was to start the chemo today, and we did…

I was grateful to have a good week or more at home and felt it did Kiwi a lot of good. When driving up here today Kiwi knew what was going on with all our stuff packed and she has begun to recognize a few landmarks as we get closer to the hospital. She was pretty upset and didn’t want to get out of the van. We reassured her we would not leave her and we would be there to love her and make it fun. She perked up and ended up doing really well later in the evening after the chemo was done.                           

These last three rounds will be a bit different with only two drugs for two days at higher doses with the stem cell rescue. One of the drugs requires a bath every 8 hours and she has to wear a special gauze dressing with a guard to help her broviac from pulling out to keep the area open and able to breathe. 3 am is our first bath and temp dressing change; this will go over the next three days. And then we will have the stem cell rescue in the ICU like last time. Bring on the spaghetti o’s J.  

We will keep updated as well as possible…                                                                                                       Thank you for supporting our little girl…..          

 

First I want to say thank you for all the nice comments on my last post. It is very nice to feel the amazing support ezpecially when opening your heart.
We came home today and Kiwi has been doing really good. Her vomiting has decreased expetionally, only like once a day. Still concerned why she continues to throw up even that much. We are trying some different things right now before we have to move on to any thing more I guess you could say extreme measures. She has been wanting to eat a lot more also. It so nice for her to say she was hungry. Today when we were leaving the hospital she kept telling me she was hungry, which is a new thing for her to actually say she is hungry. I told her wee needed to get the card and got to the store and then we could buy some food. Well she got out her little card that she carries around in her purse and said she would buy food with her card and I could buy toys with my card:) She carried it around until we got to the checkout at the store. It was super cute. I have been such bliss just being around her these past few days with her feeling so spunky and full of two year old life.
We were also sent home with iv nutrion. It runs about 16 hours and has brought back some memories of when she had to wear her bag all the time. It made for a crazy night getting home from the hospital with unpacking and grociers and then setting up all her oral and iv meds and then having a nurse come and train us on the iv nutrion. We also have to check her blood sugar while on because it has dextors and we don't want to get to high. That means a little poke and of gosh I hate to hear her say owie. It breaks our hearts. Hopefully she can catch up on nutrion and we can wean off the iv stuff and just back to nanas and food.
Friday is when are next round starts and so we only have 3 days home before we are back in. We plan on making the most of it for Kiwi and us. Faun's BIRTHday is tomorrow and we are going to have a little party with my sister and her boys. Kiwi will be very happy to have them here she talks about them all the time and hasn't gotten to play with them in a while.
Please continue to hold us in our hearts praying that this next round goes even smooter then the previous.
That Kiwi starts wanting to nurse and eat a whole bunch of yummy healthy food.
That Kiwi's body can heal to accept and process the food that she eats.
Please see Kiwi balanced with the energy and gifts that she holds and offers throught her whole body and soul.
See her blasting through this and shining stronger and more balanced then ever before.

So I have really been procrastinating on getting this update posted, I am really sorry.

I can’t really explain why…….partly I think that I didn’t have the energy. Not as much physical energy but more emotional and mental.

Kiwi’s last round of chemo went way better than her previous round that caused all her problems. Kiwi tolerated the chemo really great this time. The vomiting increased but not too much. She also got back some of her stem cells. I was a bit nervous because sometimes they can have a reaction to the product they use to store the cells, luckily she didn't.  It did causes Kiwi to smell a bit like an Italian restaurant, Papa thought she smelled like spaghetti O’s. She could smell and taste it really bad, I think it made her pretty nauseous that night. She kept telling me to spit out my gum because it was smelly, but I didn’t have any. It only lasted about 24 hours. We then started transitioning her to all oral meds, it didn’t work out that well, just too much for that little thing to handle. We were sent home with some of her meds on IV and some oral. Overall she continued to be in a good mood. It was Friday when we went home, her counts started to drop after that and her energy level with them. We ended up needing to go into clinic for a platelet transfusion on Tuesday. At this point she had no white blood cells, while in clinic she started to have a mild fever so we were admitted for IV antibiotics. So here we are in the hospital again, but Kiwi is doing pretty well. Her counts seem to be showing some recovery. We are now working on her nutrition. Although Kiwi stills nurses on demand, which sometimes is more than her one year old brother, because she is still vomiting 2-6 times a day she isn’t getting much nutrition from it. She wants to eat and it will stay down for a few hours and sometimes longer but then she vomits. She has dropped back down to 26 pounds. She hasn’t had a fever since clinic and none of the cultures have grown anything yet, so really our biggest focus is on getting her to keep things down, they have mentioned a feeding tube but I am really not feeling that. I mean it would be different if she wouldn’t eat or nurse but she nurses all the time and wants to eat, just gets discouraged after a few bites, probably because she hasn’t eaten in so long. The ongoing problem is that she throws it up. So a feeding tube in my opinion wouldn’t solve the problem because she would just continue to throw things up, and I can imagine it will be a hard adjustment for her. She is so jumpy when it comes to anything around her nose and face. I am hoping we can just find out why she keeps vomiting and fix that so she can resume her comfortable eating. When she is doing well physically her emotions seem to run higher. She has been having these moments of breakdowns. Today she went through one, she was really wanting her brother Faun, then wanting to go home and then after seeing some pics of herself without her central line or what she calls her dressing, she had a huge breakdown wanting it off. It literally feels like my heart is getting stomped on knowing I can’t truly give her these simple life things back right now. I just hold her through it and comfort her the best I know. Her counts should be back up here in the next day or two, where at least she can see her little brother and wear a mask in the halls. I think that will really lift her spirits. She got very attached to a bug that was on our window today, she was upset when it flew away so we painted some bugs and put them on the window, she seemed to enjoy that. I have had a lot of exhausting moments this week, sometimes it feels as though there is never a break for anyone especially Kiwi. The oral meds have been hard. She is so sad when she has to take them. I don’t want to have to wake her at night to give her meds. I just want her to continue to be able to sleep peacefully.  

Will's mom and sister had a nice visit. It was really hard to have them leave; it was nice to have them here in this process. I am really thankful for all the family support we have had. Will’s family have made numerous trips out here along with my father. My father actually is just finishing up almost five weeks of being out here. And without my mom I don’t know where we would be, she pretty much manages Faun 24/7 when we are with Kiwi. I feel very grateful. We threw an early birthday party for little Faun before Wills’ mom and sister left, Kiwi really enjoyed it. We did it right in the hospital room with balloons and hats and all. She told us she wanted to do it again.

Today was a beautiful sunny day here in western WA and I took a few walks by the 150 year old sequoia tree that is on the way from the hospital to the Treehouse where little Faun hangs out, soaking up as much sunshine to bring it back to my little girl, who patiently awaits the moment when we can spend some time in the world outside of the hospital.

I have been doing a lot of thinking and processing the past two weeks. I have found that while in an experience such as we are in, you move rapidly and sometimes through emotions and feelings that can take you places that you don’t necessarily expect to be. I found myself feeling sad, frustrated and out of control a lot more these past few weeks. Even though Kiwi is doing well for the most part, at least much better then she has a few times in the past, I find I am having a harder time. When Kiwi is doing good I hate the thought of once again heading into chemo knowing it is going to take her smile away. Knowing why that smile is gone. I hate knowing that we still have so long to go. I find myself in denial sometimes which then seems to lead to depression once realizing this is really happening and then I think I start to find ways to cope and connect. I have been reading a lot of other stories of children who are going through cancer and treatments. It has been very sad for me and in moments they leave me feeling like I am giving up and it is already the end. Since all of this happened with Kiwi, I feel I have had to question all of my beliefs about everything. It has been very confusing for me, and sometimes I think that I jump to conclusions. You know how sometimes you ask the Divine for something, well at least I use to do that a lot. Will and I were at a very beginning place in our lives, constantly exploring what our family was going to look like and what our next steps were. I remember asking for meaning in my life's journey, a mission that would almost I guess push me on my path. I think sometimes we ask for things expecting it to look a certain way and then when it starts to move that way and doesn’t look the same way in our minds, we get discouraged and move to a new image. I am feeling I need to look at what is the light that we are moving towards, believing in miracles again. Asking for and patiently waiting for my path to continue to reveal itself, knowing and trusting that I am held in complete love and having faith that my daughter is healing and will be, and share her miracle with everyone she meets, giving this light she has to the world. The past few weeks have been filled with a lot of soul searching, through not just my soul, or the soul of Will’s and my relationship, but also the soul of my daughter, son and the soul we share as a mother and her children. I have began to shift into reading stories of inspiration, hope and miracle, and praying and sharing the ability of our faith to heal. WE are so powerful and just so amazing and that seems to sometimes get lost in the thoughts of living that we forget about the spiritual beings we are. We have gifts, passions, love, we each individually have the ability to shift the world we live in into something beautiful and blissful if even for a moment, in that moment it is the only moment that is right now. Please understand that what I am saying here isn’t some rigid thing but the everlasting flow in which you choose to receive this. I have faith, hope, love, joy, smiles and belief in miracles and the Divine that I am still discovering and possessing into my being as I journey through what it is to be spiritually human. I continue to pray that I become the mother and women that I see myself being, and that my children see me as this also. My daughter is light, please see her light being balanced throughout her body, see her sharing her light throughout the world, helping things grow whether it be a plant or a heart of the awareness of ourselves and the beauty we behold. Sometimes I have this image in my head of Kiwi bringing all this powerful energy through her heart and flowing it to her hands and feet, just glowing so powerfully. Then this light shines out her hands into the world and with every step she takes beautiful green plants are growing behind her path with striking dark purple flowers. Please see me in my power as a women and a mother with truth as I bravery share my heart with all of you in hopes that you see me and hear me with love and  can give me strength to keep sharing. Please hold that my path will continue to be revealed to me in how I can support Kiwi and her miracle. And please pray that other families and children going through this similar situation will find their path to their miracle and truth.

Thank you for hearing me….

 

Our week home was really nice…

It started out a bit rougher then I had hoped just because Kiwi was still moving up and down in recovery.

We arrived home on Friday; it actually took a lot of tender care and understanding to get her home. Until we were in the van she was having a bit of a panic attack and didn’t want to leave the hospital. After 25 days there I can imagine that it is hard for her to understand why and when we can just leave and come home rather than stay. On Saturday she started to be sleepy not a playful as I thought she would be. We also had to do home IV antibiotics, before one of her doses we went to push saline through her line before hooking her up and it wouldn’t flush. After talking with the on call doctor he sent us to the ER because it was the weekend and we couldn’t just go into clinic. Only one day home and already back. Luckily as soon as we saw our familiar IV therapy friend she flushed her and her line flushed fine, we were sent home. We are thinking it was just pinched by the way she was sitting. So back home Kiwi continued to get worse through the night, lots of vomiting with dark digested blood (more than likely from too much vomiting). We were in close contact with the on call doctor. After waking up and vomiting around 11pm she began acting really strange, almost delirious. Now pushing midnight, the delirious state continued to get worse. She would try to lay down and sleep but wouldn’t close her eyes just stared into space randomly saying things that didn’t correlate to the situation. Will and I realized that she could be having a seizure. There are many types of seizures and she doesn’t necessarily have to have body movements. After reading a bit of our seizure information and watching her a bit longer her eyes began to deviate and we concluded she was having a seizure. We gave her oral ativan and it seemed to help her get to sleep and stop the episode. I tried not to let too much run through my head about what could have caused it. It can be so many factors, and I knew that we had an upcoming MRI that would show any growth of tumors or edema. The next day we started Kiwi on IV fluids at home and switched one of her meds to IV. She began to improve over the next few days. We were blessed with the arrival of Will’s mom and sister for the week, my father also arrived last week. This gave my mom a well deserved re coop and us some really good quality time with family. Kiwi quickly adapted to them being around insisting on grandma giving her water after medicine and etc.. She is so funny and particular sometimes, I love her so much. By Tuesday afternoon Kiwi had really improved, we had an amazing day on Wednesday. Spent time in town letting her pick some toys out and just being with her and giving her space to be a kid again.

Thursday we were admitted again for an MRI, sedated hearing test and the third round of chemo. Kiwi’s MRI continues to show shrinkage on all tumors and edema. Not as significant as after the first round of chemo but still encouraging progress. We know that the chemo is making an effect on the tumors!!!! Kiwi started her chemo yesterday and besides a little more throwing up she is doing great. Wandering the halls, playing and even ate a bit of breakfast this morning, I am really proud of her. Hopefully all of the precautions we are adjusting during this round will prevent another experience like the last round. We will keep posted.
Gosh I feel there was more I wanted to have in this blog post but my mind is feeling blank, probably tired...
I have pictures to add as soon as the time permits, hopefully in the next day or so.

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Also I wanted to share that my eldest sister is part of a very empowering magazine related to birth. My other older sister is an amazing photographer, she has taken many great photos of Kiwi, some are on the website with more to come. Anyways my point is the sister who takes photos took some beautiful pictures of my son’s birth that are featured in the latest issue of the magazine. They were also kind enough to share a bit about Kiwi along with the photos. We greatly appreciate the support....
http://squatbirthjournal.blogspot.com/

So we made it home today and Kiwi is doing really well. I don't have much energy to write a big update as it was a very long day. Transitioning back to home with everything that comes with it can be exhausting for the first few days, but we are here so that is what matters. I will write more of an update when time and energy permits. Kiwi is very happy to be home in her soft blanket with her fairy pillow!!!

No we didn't get to go home yet but her counts finally seem to be going up continuously everyday... Yay!!!
We got to leave the room, this was the first time for Kiwi in two weeks!!!
She was delighted. We had a really good day, you could tell she is feeling better. She wanted to load up her wagon and go for a ride, it was super cute. Everything that was giving her issues before is improving greatly.
She was up and playing, walking around good, it was great to see her smile and laugh. Kiwi got two new amazing dolls this weekend, one I couldn't resist in getting her and the other was sent to us accidently but the true owner wanted to gift it to Kiwi from her and her little ones, it was such a thoughtful gift and Kiwi loves them. They are these great mamma dolls that have little babies with them that also breastfeed and birth, just beautifully handmade with love. She wanted the little babies that come with the mamma dolls to sleep on her under the blanket last night. She usually tells me to come close and hum to her after she has finished nursing; she wanted me to hum to the doll babies also last night. We also were gifted a few hats for Kiwi to wear. They really help her keep her mask on when we go in the hall, she insists on having one on when we leave the room. They are so adorable. Thank you for all the generous gifts everyone, they really cheer us all up!!!
Hopefully we will be going home by this weekend if things continue to improve. We of course are pushing back her next round of chemo as it was due to start today. We are thinking the end of next week or beginning of the following week. We will be able to be home for at least a few days maybe even a week...YAY!!! We have also decided that on this next round she will get back some of her stem cells. It was only to be done with the last three rounds of high dose but because of the hard time she had after this round and the fact that we got plenty of harvested cells Kiwi's doctors and us as well thought it would be a wise choice.

We also updated and finished the website, so if you haven’t checked it out yet please do.

We will update again soon, hopefully the title will be We Are Home!!!

If you want to check out the dolls, visit www.mamamordolls.com, they are great….