Busy, busy, busy!!!

Ryan pre-cut

So beautiful!!

Ryan and Micheal

Sooo much to fill everyone in on!!! We will start with Wednesday! We were finally able to convince Ryan to get her hair cut. We had our cousin Micheal come over and do it. Her hair looks so much fuller now with the cute little bob she got...or as we had to call it for her "princess cut" not "bob"! She did a fantastic job and we are so happy that we were able to have someone from the family do the honors. Thank you again Micheal!!!

Kyle in his gear

Watch out!!

We also had Kyle come home!!! Sarah, Cait, Christian, and Shamus are here also. They all flew in later Wednesday, so we got an afternoon visit from them. It was so good to see them, especially Shamus...We had not even met him yet! Kyle appears as though he has grown quite a bit over the summer. He seems a lot taller to me, which is good because the day he got back he started football!!!! He has already done a great job and will definitely be a starting player. I don't know if I have ever been so nervous and excited all at the same time!!!


Sunday morning we attended a pancake breakfast fund raiser for LLS (Leukemia & Lymphoma Society). We all wore our AWESOME T-shirts (Thank you soooo much Terry!!!) and we had a great time. We met some really nice people who are affiliated with LLS and look forward to doing some fun and exciting things with them in the future. Ryan got to appear on the news and she was also a part of a donation check presentation! It was neat to see her "in action" and you could tell she liked having the spotlight. Plus she had a ball playing with all her cousins.

Thursday we had my Dad and his finance, Kim fly in. They had originally planned to be married back home when we came out to visit this summer, but due to Ryan not being able to travel they decided to have a small ceremony at the beach. We left for the beach Sunday after the pancake breakfast and their wedding was on Monday. The wedding was perfect! Then Tuesday they left and took Logan with them for TWO weeks. I must say, I am having a hard time with the idea of her being gone for that long. I was away from her, and Adam for almost two weeks when Ryan was first diagnosed, but it was for a reason. I know she will have a great time and truthfully she deserves the spoiling I know she will get there!!!

Yesterday went smoothly for our Princess Ryan. She did have the lumbar puncture chemo treatment. I was there by myself for the first time and I think it went well. It was just tough trying to time the getting something to eat and her getting out of the procedure at the same time. I like to be there when she wakes up. We also had an extra step. When they did her exam in the clinic they did not like how swollen her neck seemed. They were a little concerned and wanted to get an ultrasound to be sure there was not a clot around the line into her port. We got the results of that pretty quickly and everything was okay. She is just still showing the side effects of the steroids she was on....neck rolls. Of course we were between buildings when the Earthquake hit so we did not feel a thing. We went into the Medical Plaza building and everyone was all flustered and one of the receptionist said the phone lines were down because of what had just happened. They said that the building is on rollers so it swayed for a long time. I am actually glad we were not inside for that, I would have freaked I think!!

We have been busy and I think that is good for Ryan and for the rest of us. Thank you again to everyone that has surrounded us with love and support. We appreciate everything that has been done for us so much, it is hard to put it into words!! I received a call the other day asking if some one could put in a request for a prayer quilt for Ryan and when she called her church they had already had a request from someone else for Ryan. Amazing to think of the countless amounts of people out there praying for Ryan. Thank you again!!! Love to all!!!!

TUESDAY

Logan and Ryan sportin' their Green

Say cheese!

Mommy showing the back

Logan showing the front

The shirts are here! The whole family wore them in support of Ryan. Everyone at the clinic loved them! Unfortunately we did not get a picture of us all together. But next week will not hesitate, and can't wait to get pictures from those who have their shirts so we can post them on here.

It was a long day....Unfortunately we did not get home until 8ish last night. We made it down to LA around 9am, saw the doctors and had to get blood drawn so they could see if she would need a transfusion. Her blood counts were a little low when we had gone to the ER Friday night. They accessed her port for the first time EVER to get the blood. That did not go quite as smoothly as I had hoped. It is a pretty good sized needle that they have to poke her with. The good part is they know right where to poke and that's it, they leave it accessed for the rest of the visit. She did end up needing a transfusion (so she got the blood through the port). Then they did not have her procedure (the lumbar treatment) scheduled until 2:30. We were a little ticked, just cause she is only 4 and hadn't had anything to eat or drink since 9pm the night before. We were just thankful she was not taking the steroids anymore. Her appetite has definitely decreased lately. She had that procedure after the blood transfusion, and everything went smoothly there. Everything was just taking place a lot later than we are used too.

Ryan's Aunt Julie and her boyfriend Jason had met us down there and had offered to hang out with Logan and Adam during Ryan's appointment. We were hoping to all go to the beach together, needless to say we were not able to. But they got to go and had a great time. They almost missed Julie's plane thanks to LA traffic.

It was a long day, but Ryan is feeling great now that she has had the transfusion!

Love to ALL!!!

P.S. Hope everyone likes the music!!!!

A Little Scare

On the last entry when I said time for a nap....well that did not quite happen. We received a call from a nurse in the ER stating that the doctor saw something on her chest x-ray that he did not like, and that we needed to return immediately. When we got there we were brought back right away and the doctor came in and let us know she had a pneumothorax on the left side. When they were trying to get her port in on the left side they must have put a small hole in her lung. He said that it can be resolved with high flow oxygen, but some times they need to place a chest tube. Thankfully, when they repeated her chest X-ray they found that it had resolved on it's own and there would be no need for a chest tube. Her pediatrician was called and he wanted to admit her for observation, but after he arrived to examine her, and saw that she was okay, he agreed to let us go home. She did not want to stay in the hospital!!! They say that a lot of kids that have medical problems as children grow up and want to become doctors, but I don't know about Ry. I think she is already done with hospitals and she has only just begun. Now that she has the port and does not have to be stuck and have tape removed all the time it may get better. We shall see!
Also, as we were getting ready to walk out the door to go to the ER we got a surprise visitor. Ryan's Aunt Julie! She stayed with us for about a year and went back to AZ in Dec. So we have not seen her for a while. Ryan and her are very close so it really made Ryan's day to see Julie. She was able to come with us to the ER to keep Ryan company instead of hanging out with mommy...again! She will be here for a couple of days so we look forward to spending some good time together!
It has been a pretty busy week in comparison to previous weeks. Thankfully though all is well now. We have clinic on Tuesday and she will also be getting a lumbar chemo treatment, but I have faith that all will go smoothly with that. I will write again soon to keep everyone updated, and hopefully we won't have any more unexpected trips to the ER. Love to all!!!

Mission Complete

Hello! Well, the port was successfully placed yesterday. She did a great job and did not have to get pokes like she was worried about. They were able to start her IV in the OR after they took her back. They gave her a little "happy juice" by mouth first. Oh my.....was that ever funny. She was a crack up!!! She just kept giggling and doing all these weird things with her mouth. Then asking us what was so funny, and laughing some more. I was in tears at one point. She didn't even care that I couldn't go all the way back with her, which I am pretty sure was the point.
There were a few "hiccups" as Matthew called them. When they tried to place it on the left side they ran into a dead end vein that is supposed to have closed up and gone away by now (at her age). So they had to place it on the right side and in order to do that they did have to make an incision in her jugular vein. So, she now has two incisions....one in her jugular and one below her right collar bone. They say that is not uncommon and everything will be okay. She will just have two scars instead of one. They also informed us of an umbilical hernia...much to our surprise. I had no idea!!! I just thought she had a little outtie!! He said it is not very big so they will repair it when they take out her port. Which will be in a couple of years. Overall everything went pretty good.
Then last night about 9 she felt a little warm to touch. I took her temp. and it was 100.0. No big deal for any of us but for her it can be a huge deal. Well, half an hour later her temp was 100.8 and an hour later we were on our way into the ER here in Bakersfield. With the pic line issue, and her just having surgery there was a reason to be concerned. The doctor that was on call down at UCLA told us we should go in and at least get her "levels" checked. If her levels were low than she would have to be admitted to the hospital and treated with antibiotics. If her levels were okay than we would be able to come home. Six hours later we were able to come home. Her levels were good and her fever had gone away by then. Needless to say, we are all a little tired today! Time for a nap so I will write again later! Love to all!!!

Congrats!!!

The girls before our Tea Party!

They had Makeovers by mom too!

Ryan and Mommy in our funny hats!

Ryan and Daddy!

Congrats to Ryan! She has made it through Induction!!!! Yesterday went very well. It was another long day of "no eating aloud" for Ryan, but we had appointments in the morning that kinda ate up (no pun intended) the day a little. We first had the surgery consult for the port. Then we had to get an X-ray to check for correct placement of her PIC line. We had a little incident on Monday with the home health nurse. Her pic line was almost removed (bad), then attempted to be replaced (even worse), and became contaminated (not good at all), and they were worried about her being at risk of infection. Especially in her blood. We then went to clinic saw the docs, got her chemo there, then went up to surgery center for her lumbar treatment and bone marrow aspiration (we should get results soon), and added to that was the removal of her pic line. The pic line removal was a blessing actually. When we had gone in for the surgery consult the doctor had told us it may not be until August for the port to be put in. When we told him about what had happened with the pic line he said if it had to be pulled he would try to get us in sooner, but no promises. Well when we went to clinic our doctor made a few calls and due to the fact that her pic line was going to have to be removed....they scheduled her for this Friday for the port!!! Again, the port is what we have really wanted. So, Friday we will be heading down there for that. It is a surgery, but it is a same day procedure so we will be able to come home when she is done. We can't wait and hope that everything goes smoothly.
She has been taken off of the steroids now. It may take a few days but her appetite should return to normal. Or she may have a little decrease in appetite. And after some time her cheeks and belly should go down. She did begin a new medication. It is a cancer fighting medication that kills cancer cells so, I would classify that as a Chemo drug. It has only been one day but she seemed to tolerate it okay last night. This next phase of treatment is called Consolidation, and I hope that she breezes through it like she did Induction! I have much faith because of all of the incredible people she has thinking, praying, and supporting her! Thank you! Love to all!!!

Happy Birthday!!!

Kyle in Solvang

It is Kyle's 13th birthday today!!! Happy Birthday Kyle!!! We are officially parents of a teenager. WOW! We love you so much! Kyle will be back down here towards the end of July and we can't wait to see him! He will be coming down with his mom and siblings from that side of the family. We can not wait to see all of them and know we will have a great time with them. Love to all, especially the Birthday boy (young man)!

Hanging out

Hello out there!!! We have not been up to much. Nothing too eventful around here, fortunately. Matthew was able to take Logan out to the lake with some friends for a couple of days of camping and boating. They had a great time! We hung out around here and watched movies and did some coloring, playing, baking, and learning. Ryan was due to start preschool in the fall but obviously won't be able to start then. So, we are trying to keep up so that when Ryan gets to go in January she will be right along with the rest of her classmates.
We have noticed that Ryan has really started to lose her hair now. From the front you can't really tell but when you look down from the top you can see that it has really started to thin out. She can't stand it cause they keep tickling her back as they are falling out. That seems to be the only part that bothers her. It is really hard for me to watch my baby girl go through this. But, I don't let her see it!! It is also hard because her little face and body has transformed so dramatically. Not only has her face taken on that "moon" shape like I said, but her abdomen is totally distended. Her little legs are still so skinny then to have this belly. It is extremely tough to see! She still has a very strong spirit. She has been up more lately doing stuff around the house. A lot more playful and talkative. And stilllll eating!!! It is insane (the eating I mean), really no joke!!! I had to run to the neighbors to borrow a can of black olives cause she was having a craving so bad. Nuts huh???
This Tuesday will be another long day for us, especially Ryan! Please pray for her. She will be having the chemo in her lumbar spine and the bone marrow aspiration.....again! This is a huge day! Again they will be testing her bone marrow to determine the effectiveness of the chemo plan she is currently on. Although they said after the great results they saw last time they don't foresee there being higher then 5% Leukemia blasts, they say you never know for sure. She is sedated during the procedure so the only thing that tends to bother Ryan is the not being able to eat. We also have an appointment with surgery dept to have her port put in maybe next week??!! We are so excited! This will remove all of the stress on Ryan during dressing changes for her pic line (there is very sticky clear tape stuff over the pic line). She hates to take off band-aids so you can only imagine how traumatic it is. The Pic line needs to be flushed everyday and the dressing changed once a week. Whereas, the port is surgically placed and remains under her skin. She can swim, and take baths and it does not need to be flushed. It will be great....I hope! Well, I will write again probably Tuesday after we get back. Thank you all again for your love and support and most importantly prayers. We know that is the driving force behind all of this going so smoothly. All our love!!!

Pictures

Making some Jello!!!

Great news!!!

Hello! We received great news yesterday (Tuesday, sorry I thought I posted this last night but I didn't)! They are seeing less than 1% Leukemia blasts. Their goal is to have less than 5% by day 28. This was only day 14! That is incredible! We are so happy! Again I get the feeling like....Great were done!!! But, everything as far as treatment stays the same. We just know that we will not have to be increasing treatment dose or frequency for now. We also know that she just has all the right stuff to kick this stuff in the #$@, and will do it!!!
It ended up being a pretty short day there. We did take Logan and Adam so that they could get a look at the clinic that she has to go to every week. They also got to explore the outdoor play area they have. That was fun for them!! Then we took a walk over to the new hospital to take a look. BEAUTIFUL! If she has to be hospitalized in the future they now have a pediatric oncology floor. It even has a play room that she can go in if her blood counts are low. Everything is high-tech and NEW. Very cool!!! Other than that everything is going very well! She has gained about 4 lbs. and is doing good with her counts so we feel very confident!!

Happy 4th of July!!!

Happy 4th of July!

Okay Mom...I am done!!!

Happy 4th of July everyone! Hope everyone enjoyed festivities and fireworks. Half of our family did. Matthew took Logan and Adam to the annual Kolthoff BBQ. Ryan and I hung out around the house and played some games. We do intend on going out to the lawn chairs by the pool later and seeing if we can spot any daring people lighting off some illegal fireworks.
We never received word yesterday on the results, and they are closed today. Matthew has reassured me that if there was something significant they would have been sure to call us. I still can't help feeling frustrated. I really wanted to hear that "official/final" result. I suppose we will have to be patient...yuck!
She is getting the round cheeks I have heard so much about. Children with leukemia tend to get round/chubby cheeks from the eating, I guess. I am just happy she is eating. Her hair is thinning out, but not falling out in clumps like I thought it would. I offered for her to get a hair cut. Just to make it a little less dramatic when it does start to really come out, and she was insistent..."NO!" I even explained to her that when it did start to come out that we may have to buzz it like daddy does and she said "that's fine". I went and chopped off all of my hair, and Logan got her hair cut in attempt to encourage her, but that didn't work. I am working on her and have lined up someone to come over here to cut it if and when she wants to. Overall, she is doing really well. I still have a hard time sometimes looking at her and realizing inside that little body there is a war going on...The bad army guys-"leukemia" against the good army (Navy/Air Force...hehe!) guys- her cells. I just have to remember....the good guys always win!!!!
I also wanted to throw out there, I am interested in a little feedback on the blog. I want to know if anyone wants some other stuff on here that I am not providing. I am trying to be thorough, but I am also open to lots of ideas/questions/whatever!!!??
Thank you again to everyone for your love, prayers, thoughts, and support. Again we appreciate it more than words can express. All of our love!!!

No official word!?

We are still waiting on the official report back. They have so many tests to do on her bone marrow before they can give us a "final" result. We did speak to one Dr. who has been working very closely with us and he said it looks like there are no "leukemia blasts". Which is great news! He said not to get too excited yet we need to wait on the final report, but it does look promising. Now, it is confusing news (to me anyways). The first thing that comes to mind is....no Leukemia, no more treatment, were done. Not so much!!! It just keeps things the same as they are. She is on a "standard road map" and will stay that way unless some thing comes up. Her doses of chemo stay as they are, and we still have the six months of driving to LA every Tuesday. Then the two years of maintenance after that. We have faith though that she will make it through all phases with ease and with the least amount of problems as possible. We all know she has done it so far!
I will be posting "the official word" as soon as we get it!

Cheeseburger??

"Cheeseburgers in Paradise"
....okay maybe not paradise!!!

The second thing she said after waking up...."cheeseburger?"

The first thing she said was "What are they still waiting for??." She didn't even realize it was all done. Needless to say, everything went smoothly. We still do not have any results, but I will be posting them as soon as we do. It was her first day at "clinic" as a patient. Everything checked out normal. They said that her eating habits were totally normal and to be glad cause in a month or so we will be begging her to eat. Her counts are even up a little. It was strange to go there though....being in the hospital was hard, but we got used to it. Then we get discharged, and go home where things seemed so back to reality. Other than her having to take medications, and eating us out of house and home it was somewhat normal around here. Then yesterday showing up there again, and checking in at the Pediatric Oncology desk is like a huge reality check! It was tough!
The hardest part of the day for Ryan, aside from being anxious, was the not being able to eat all morning long. Because she was going under anesthesia she was not able to eat or drink after midnight. As you have noticed from previous blog entries that is not an easy thing for her right now. She was getting a little cranky around 1pm when we still had not even gone back for the "procedure". So finally, she went back around 1:15, was out around 2, she was asking/eating her cheeseburger by 2:20, and we were on the road home by 3. Not too bad once the ball got rollin! Not every time we go down there will it be this way (a long drawn out process). Only on the days that she has to have a procedure done...her next one is in two weeks. Next week it will just be a medication injected into her PIC line and were outta there!
I will write again today and post the results when we hear. I wanted to get these pictures up this morning and let everyone know she is doing just fine. Thank you again for the thoughts and prayers. We knew all day that there were people everywhere thinking and praying for Ryan!
All of our Love to all!!!