First off I want to thank everyone who have been praying for me and my family over the last year. I cannot believe it has been that long since I last blogged. For the sake of brain power this entry I hope will be informative but short...
Details of the last few weeks,
On the 17th we took Joshuah to urgent care and he was admitted for pneumonia and low oxygen levels. On the 19th he was released and I was so happy to be getting to sleep in my own bed that night. Well. I went into work for a couple hours just for few appointments (that didn't show). Let me back up a lil bit. On the 15th on our way home from Klamath Falls the power steering belt in my car broke...replaced it and it broke again...so Chad had been driving me all over over this time...so he got to the office to pick me up and I was locking up and all of the sudden I had this sharp pain through my abdomen. It felt like the gas pain I had after I had my c-section. But it wasn't going away and it was getting worse as I was telling Chad to call 911. I felt light-headed and well was just in a lot of pain...I then remember laying on the ground listening to Chad talk with the 911 operator and then hearing the ambulance arrive. The whole time I just remember telling myself to keep my focus on the things above...God was holding my face in his hands as I kept saying "God YOU are in control, YOU are my life, YOU are what is important!" I then remember a lot of different details including vomiting all the way to the hospital, apologizing to the poor guy who's shoes I messed up...
Long story shorter, after lots of painful tests and GREAT doctors I had a spleenic artery aneurysm that ruptured. Due to VEDS of course, however after thinking about it and doing a little bit of research this is a "effect" from pregnancy. Even though it's been two years. Crazy huh.
SO. Surgery Wednesday night (19th) was to stop the bleeding. Second surgery on the 20th was to make sure there was no more bleeding and to close everything up. On Friday I was moved to a "normal" room out of ICU. Blood draws every day, x-ray everyday then every other day. Lots of pain meds. Lots of tears. Lots of support and love from my family to all I am very grateful for!
I am home and pain is under control. Sleeping in my own bed is nice however I wake up a lot...reminds me of when I had my pneumonia thorax and I woke up every time I took a breath it felt like which feels like no sleep.
Plan for now is to keep my BP and HR on the low side. Not like it isn't low enough but I have to keep it lower to protect my vessels. :)
It's crazy to me to think about the last 2 weeks. To think about a tube down my throat or a drain in my side makes me cringe. But on the other hand thankful for the tools and knowledge we have in todays medicine.
I could go on and on about how you should not take life for grand ted, how you should love and show God's love to everyone...BUT I am just going to say this,
Every moment we have is a gift from God. He is the one that says it's over. And 2 1/2 weeks ago he could have taken me home, but he still has a plan for me. And I am going love on my babies and make sure they know they are loved everyday! Live my life like it's my last breath. Hope you do the same! Lots of love to all!!!

Joshys first timeout.


Out my kitchen window

I LOVE the snow

But I mostly LOVE my boys!

Wow how the days go by. I am going to make this as short and informational as I can before my brain goes dead and I loose what I am trying to say...

Josh started having some troubles with his breathing yesterday morning. Said it was hard to breath and feeling very tight like the fluid was building up again in the pleural area. So we went into ER for an x-ray and tap if needed. Wait let me rewind a little bit. Last Friday (a week ago) Josh was having these same feelings and we went to ER to be tapped. His doc drained about 800ccs out and it was causing a lot of pain and that is when he stopped. Josh went back this past Wednesday for another x-ray to confirm that there was in fact still fluid built up....Thursday he had another tap. Drained out about 2100ccs of bloody fluid. Back to yesterday. So we get to ER x-ray shows the fluid has built back up and his pulmonologist drained about 1600ccs off. Josh's blood work compared to blood work he had done last month showed a big change in a lot of different areas. Not good changes. Sodium low, potassium high, platelets low, Hgb low...it goes on and on. Well last Monday Josh started the new chemo that his oncologist has been talking about/ The change in blood values we hope are from that medication. He did not take that chemo yesterday and started back up on his Sutent last night. They changed him because his onc. doesn't feel like the Sutent (current chemo) is working anymore. But we'll see. Sooooooo more blood work was done last night after he had two units of blood. Most of the values came up. Including his potassium. Not good. They gave him something to help that value go down. This mornings values show that it did come back down a little bit. The others were still crazy, and today he received two more units of blood. The fluid is building up faster then it had been. Josh hasn't felt much relief for very long that is from the last tap. He may get tapped tomorrow or Tuesday. For now he is resting at the hospital with fluids and blood as needed. Because his platelets are so low (44,000) His incision site from yesterdays tap kept bleeding throughout the night. The nurses got it to stop this afternoon....
What now. Sorry I feel like I am all over the place. That is what happens when you don't blog as often as you should. So. Josh has a choice. Either he goes to the hospital every 2-3 days for a tap and then it could turn into every day or every other day.... OR the pulmonologist can put in a chest tube (been there done that. OWIE) and that will be a permanent drain. Not sure what Josh is going to do. As of right this minute he wants to just be tapped. Tomorrow though he said he would think about it and make a decision. Pray for wisdom. On a better note. His pain has been pretty well under control. He often skips a dose of his morphine on purpose. That is a answer to prayer!
Andrew is coughing crazy and jumping up and down asking for medicine....yet he already got it. It is now an hour past bedtime. Both of the boys have had bad coughs this week and just when I though Joshuah was getting better he sounds worse to day. Pray for their health.
Hooray we are getting a new bathtub for Josh! Our bathroom has been gutted (almost) for a week now. Andrew has enjoyed showers and Joshy likes his baths in the kitchen sink. Showers with brother seem to end in tears. Joshy is walking almost running all over the place. Says, Hi, up, out, ohhhh wow, and others. Very cute to see him grow and develop. Andrew will be 4 on the 18th. I can't believe how fast time is going. I have made it my goal for tomorrow to call and get him in gymnastics. I've been saying for months I am going to do it never have. Tonight when I picked him up from Auntie Sharla's he was hanging with his feet up on the "oh shoot" handle above his booster seat....when we got home he was swinging on Josh's trapeze bar like he was ready for the Olympics. :) I promise I will keep you updated as this week goes on. Love to all!
Being carried!

I don't remember what I last posted and I don't want to read it. So here is what has gone on over the last 24hrs...

Friday morning Josh had another thorencentesis. Drained 1800ccs out from between the pleura and he chest wall. Thursday night he was VERY uncomfortable and in a lot of pain. Tossing and turning. Friday night was about the same. I canceled our nightly help so I could help him, I layed down on the couch and about every 15mins for two hrs "Jenae I need help" I lay back down. "Jenae, Jenae, Jenae, Jenae" At about 1230 I called an ambulance. Spent all night in the ER. When I left at 630 to go home and get ready for work they had yet to get him to a room. That didn't happen untill like 930am. He had an x-ray,
Oh my goodness!!! I just went to post this very long and information blog and the darn hospital internet messed up and deleted it!!!!UGH. Darn you devil it's your fault!
Well to make my very long story short he had all the test done and all came back normal. No fluid around Josh's heart. No blood clot. The fluid around the pleura area is lower. However the CT didn't come back that great. God is bigger then this! The tumors, that are in/on/around the lungs have spread, gotten bigger and are acting like a scar on the lungs. That is why he feels like he can't get a good breath. The doctors say there is nothing else they can do. And that Josh needs to go home and "get comfortable on pain meds." I don't think so. We are not in denial but we do serve a might big God. I will post more of what was written before it got deleted when I am at home next.....

The events of this week have been crazy. Lots of frustration and confusion. Josh had another x-ray done yesterday. Come to find out Josh does have pneumonia. The fluid that is built up around the pleura was blocking the view of the lungs and when they drained off what they did on Sunday then yesterdays x-ray showed a little of the lungs and the doctors said it looked like there was fluid in the sacs of his lungs which means pneumonia....
Today when the doc came in the new info is now NO pneumonia! Josh doesn't have any symptoms of infection. No fever, no increase white count, no cough.... looking at the x-ray again they think there is just so much fluid still in there that it's putting pressure against the lungs and that may be why it looked like pneumonia. UGH! We are all home now. Josh received 2 units of blood yesterday and is feeling pretty good. He does still have some tightness in the chest. The plan at this point is to call Josh's doctor when he starts to get worse again and then the doc will set up a appointment with radiology and we'll go in and they'll tap....withdraw more fluid. At some point depending on how often he has to go in for a tap he will have to have surgery. During the surgery they would drain all of the fluid (right now they can only drain about a litre being safe and not a lot of pain). They will "ruff" up the pleura so it will stick to the chest wall. When that happens fluid can't accumulate there. This procedure is about 80-85% effective. Just like with every tap that is done there is always risk with surgery. When it comes down to it, it's all going to depend on how fast fluid is accumulating. Pray for HEALING! Pray that this Sutent (chemo) Josh is on will work overtime and God will use it to take away the cancer!

Being carried

Happy New Year!



So a week or so ago I mention to Josh that I had a feeling he was going to be in the hospital for something in the near future, I didn't really think so but it just a feeling. It's been several months and praise Jesus Josh hasn't had to goto ER for anything. Well guess what. We're back at the hospital. :(

Josh started having some tightness and difficulty getting a deep breath 3-4days ago. Saturday morning it was worse and so I tool him to the doc and he said he didn't hear any wheezing or crackling but did hear some dimenished lung sounds on the right side. (I heard the same thing when I listened to him the day before) :) Anyway... so doc wanted an x-ray and sent us to the hospital ER for further testing. We spent from about noon on Saturday to 330am Sunday in the ER. He had x-rays, blood work and a CT done. He had fluid built up between the chest wall and the lungs. At 100 this morning they drained about a liter out via a very small cathater. It took him three times of poking before he got in. I guess the doc kept hitting resistance (tumor). Today Josh has felt much better. He slept REALLY good he said from 4am till 1130am when the doc came in today. He is able to breath better and doesn't feel like he needs as much O2. SO! It looks like this fluid is accumilating from the cancer and is not from infection. Bittersweet. If it was infection then it could possibly be treated. Because it is from the cancer it's just going to keep happening. When Josh starts to have symptoms ie: difficulty getting a deep breath, hard to breath then they will aspirate and remove fluid as needed. The doctor said that they could put a chest tube in (been there done that) and drain all of the fluid out and start over to see how fast it's accumilating. However when they took fluid out this am after about 800ccs it became really painful for Josh. They wouldn't be able to totally empty the fluid out via chest tube because of that reason. Wait and see. God is bigger then this and we believe this will not lead to the end! This circumstance is one more for us to surrender to God. It sucks! Yes. But it's a bump in the road to healing! God is working everyday. Proof? Well when we were sitting in ER yesterday Josh was getting pretty uncomforable and need to move around. Well I look over at him and he is lifting himself up off his chair with the strength of his arms and putting little weight on his legs (stability). Hello!?!? He hasn't done that in MONTHS! More? Since he got out of the hospital in October he hasn't been able to sit in his chair for more then and hour of two due to the bedsore he has and because it was just too painful on his whole body. Yesterday he was in his chair from 1130am to 600pm! NO real pain. Tell me God isn't working.

I thought I'd post our Chrismas/New Years letter on the blog this year instead of printing it. Enjoy!


For unto us a child is born...
As most of you know our year has been filled with blessings and trials. We've walked through the desert and we've drank water from the river.

Our year started last December with a blessing. Joshuah Titus was born on the 5th. Weighing 4lbs 6oz (large for being 8 wks early) little to no problems he was our joy!

On December 19th we started a long walk through the desert when Josh lost the use of his legs and tumors were found all over his body. One of which was putting pressure on his spinal cord. Josh had emergence surgery to relieve the pressure and to get a sample for a biopsy. Christmas Eve was when it was confirmd cancer. One year, four surgeries, three different rounds of radiation, several hospital stays, oral chemo, dehydration, pneumonia AND a bed sore later my husband is the strongest person I know. He is optimistic about the future. He is letting God fight the battle. We both are. No other way to do it.

Jeramiah 1:19 They will fight against you but will not overcome you. For I AM with you. Declares the Lord. This cancer will fight us but not overcom us. The Lord IS with us!


One of our biggest blessings; Andrew. Who will be 4 in February still smiles with his eyes. He is loved by all who come in contact with him. Funny, outgoing, stubborn, 100% BOY! He is into everything and anything superhero or cowboy. He is enjoying going to pre-school just down the street from our house. Comes home with lots of stories and is eager to tell us about all of his friends. Andrew had his first Christmas program at school this month. He stood there the whole time and didn't sing any of his songs or do any of the hand motions. When I asked him why he said that it was because he didn't want his hair up (spiked) he wanted it down. And he didn't like the sweater I made him wear! Boys! Andrew is protective of his brother and can't wait until Joshy can "play" too! It is interesting to see how they interact with one another. Joshy knows what buttons to push and Andrew, well lets just say he's the boss. :) As we all know kids say the darndest (is that a word?) things. I've started keeping a diary for my children about my children and the things they say. The other day after Andrew and I had been fighting all morning, he says to me: "Mommy your the nicest mom I ever seen." So I then tell him to tell daddy what he said and he says "mom is the best mom in the whole world." Tears.


Blessing number two. Joshuah. He may have been a preemie but he isn't slacking in many areas. He is on the lower percentile for his length and weight. Just a peanut. But that's OK. He is a very happy boy and content in most circumstance. He brings a smile to our face on a regular basis. Joshy just cut his first tooth at 11 1/2 months. At this moment I believe he is working on tooth number two! He is starting to walk a little more every day. Getting more daring and walking between furniture. Every time Joshy is standing alone Andrew yells "MOM LOOK, LOOK he's doing it! Cute. He says mama, dada, hot and ite for bite. We are working on sign language but he isn't picking it up as fast as his brother did. As like any mother I could go on and on about my kids. Blessed are we!

I have been blessed with fairly good health this year. With the exception of abnormal head aches which lead to a spinal tap which lead to a spinal head ache. Yahoo THAT was a great week! Nothing abnormal showed up on any on the tests. Thank you Jesus! When I am not at home taking care of my family I can usually be found at work. That is the social part of my week. Still Friday and Saturday's (I am at home a lot) which is just enough time for my husband to get a break from me. :) I got a sewing machine for Christmas from my hubby so I will be taking up the hobby of sewing in hopes to start quilting. I just have to figure out where to start! Still enjoy scrappbooking and working my Mary Kay business!

We spent Christmas at home this year. And were surprised with the attendance of my dad, Marge, Shelby and Kayleena. Gregory and Jennifer showed up at 8am Christmas morning. Not suppose to arrive till that night. Made my day! We celebrated Jesus birth with a perfect prime rib dinner. One of our Christmas blessings was giving to us by the local food bank. Through their make a wish program we were blessed with a load of Christmas gifts for the whole family from Santa. The Tuesday before Christmas Batman (Andrew's fave) and Santa showed up at our house in a Navigator limo and took us out to lunch. Andrew was in heaven. He/we had such a great time that day. To see Andrew so happy is a blessing in it's self. They are also going to fly Josh's good friend Brad out for a visit in February. Josh lights up when we talk about it. The other thing they are blessing us with is the partial remodel of our bathroom. Putting in a new bathtub will be the highlight. Currently we can't get Josh's hoyer under the tub to lower him in. This will change that and lift the tub off the floor so he can at least be lowered in for a quick soak. Exciting!

The Lord continues to meet our needs through your support, prayer and encouragement! You are one of our many blessing this year! Please continue to pray for our family in the year to come. Thank the Lord for the healing he is blessing our family with. He is our joy, hope and love!

Being carried,
Josh, Jenae, Andrew and Joshuah

I always start out by apologizing for not blogging sooner. The truth is that I just don't want to. I want to keep everyone updated but by the time I actually get a chance to sit and update I just don't feel like doing so. So I've decided that I am going to make a point to at least post a monthly blog. Probably around the 20th of each month. So feel fortunate if I post more then that :)

SO! Josh has been home for the hospital for a lil more then 2 wks now. I started him on his next round of chemo a week early, because he was feeling so horrible. He started to feel better quick. He is on a med for BP and HR. Both doing great! He started getting accupuncture last week. I've been buggin him about it for months and well I guess he just gave in. It helped with some back pain he was having. He went again today and had Greg work on energy and calming. Hopefully he'll start sleeping better. Since is appt last week, on Wednesday we've been out EVERY day since then. I did a flu clinic at work on Thursday, on my feet all day. Come home and Josh says "so are you ready to go grocery shopping?" How can I tell him NO
I started this post about week ago.

11/1/09 Now today I WILL finish.... I hope. :)
First I want to say thank you to all of you who attended our fundraise Friday night. It was a huge success. Around 3,500 was raised. Such a blessing!!!
Josh has had a lot of good but recently some bad days. We went to Eugene last week for a couple days and while we were there on Thursday he started feeling nauseated and his BP was lower then usual. Since then he's been really tired, sick to his stomach, achy all over.... so he's been in bed trying to recoup. We are going to try and get in to his doctor tomorrow to figure out what the heck is going on with his BP.

Andrew dressed up as a duck for his party at school on Friday. Had a GREAT time. Last night he was Batman and went to the harvest party at the church in Keno with papa, grandma and Jessie. He came home with his face painted and totally zonked out! Papa layed him in his bed and when I went to bed and hour or so later he was still in the same position, on his back, frog legs and his arms out to his side. If I hand't been so tired I would have taken a picture. Joshy stayed home with us and we tried to have a quiet evening. ha ha.

11/2/09 Okay third times a charm right? My power cord to my computer has failed me. Thankfully Roy and Shelly have let me borrow theirs (we have the same laptop). My new cord should be here by Friday.
Josh started this morning off with multiple issues but all resolved when we started talking about going to ER because he can't get in to his doc till Friday. No really he started to feel a little better as the day went on. He got into his chair around 530 and now at 900 he is back in bed. He is REALLY sore from laying in bed for the last three days. Josh has a CT tomorrow AM. Just a recheck on the tumors. When he saw his oncologist last week in Medford she said that his Tyroid is a little high. That is odd because the chemo should be causing his Thyroid to be low if anything. So she ran more tests and we are still awaiting the results. If it is indeed high then that would explain the increase heart rate and the not so restfull nights. We'll see.

Untill next time.... we're being carried.

For I know the plans I have for you, declares the Lord. Plans to give you hope and a future. Jeremiah 29:11

Update. Sorry for not posting sooner. Josh's cold wasn't getting better and on Saturday his BP and Pulse was very high. Had home health come over and that is when he said his lungs didn't sound clear anymore and he should be seen. Well he wasn't breathing very well and need more and more O2, so we took him to the ER. They started him on a full 15l of O2 and was able to get him stable on 6-8l. He does have pneumonia and therefore he was admitted. Yesterday am his Pulse was getting up in the 160's it had been stable in the 130-140's. So they moved him to the ICU for better one on one care and better monitoring. Breathing treatments every 4hrs. A BiPAP available for aid in breathing. A good doctor and a jerk for a doctor.... it's all craziness. Andrew stayed with Josh and I here at the hospital last night. It was sweet. We shared the CHAIR! Who needs sleep anyway? The 3yo does and he got some. :) Because he has to get IV's replaced every so many days and new ones added the decision was made today to put in a pick line. Better access and fewer pokes. SO. Not to long after that was put in Josh was sitting up on the side which is where he is most comfortable and is able to sleep. ummm....where was I at??? OH okay so he was sitting there and actually eating a little bit of lunch (Abby's) and he was laying back some, pulled himself up where he was sitting up more and all of the sudden the nurse came in, I looked at his stats and his HR (heart rate) was 212!!! Holy moly! SO they tried to get him to self regulate...shock his heart by coughing or bearing down. It didn't work. So then they went to medication. It did work after a period of time. He was dosed up with Morphine and was able to rest a little bit. Then at around 7:30 it happened again! This time his HR was in the 190's and stayed. Didn't go down with anything aid. Crash cart was in the hall waiting for use. Weird feeling. FINALLY with medication it came down. AMEN! I think it was the pic line that was causeing the tachycardia. If the line is in to far it can tickle the right atrium and care the tachy. So the line was pulled out about 2cm. So far it hasn't happened again. He is now laying back down in bed and getting read to put the bipap/cpap mask on. Pray for a good nights rest for the both of us :) The care here and been reall good. Better then I've expected. Never judge a book by it's cover. Or by the stories you hear from other. Experience for yourself but with precautions. He did have a EKG done after the first "attack" and a Echo after the second one. His heart looks PERFECT! The just took some blood to perform a D-dimer to check to see if there is any fluid around his heart. Not that I think about it doesn't that test check for blood clots?? I asked the nurse if that would have shown up on the echo (yes) she said no. So I am not sure she knew what I was asking. Anyway. The echo was normal so no fluid around the heart. Right? We'll see what happens during the night. Wait it is during the night. No wonder I am tired. I was going to go home and sleep in my own bed ALL night tonight. Well went to dinner at Erick and Sharla's got done and got a call to come bake to my new home. I realized that today was the last day of the month and I need to goto the store and pick up some WIC for Joshy and got there and realized I had already gotten all of my WIC and the vouchers I had were actuall ones form August that I didn't use. So I picked up some of my favorite guys (Ben and Jerry) some brownie bites, snickers, chocolate milk oh and some healthy foods for my kids. :o It's been a loooong week. And now I feel like I am rambling. Night.



d dymer

Wow I don't know about any of you but I am already tired of the cough and cold season. I feel like I've been sick most of the summer. I was mostly over the yuck I had and Josh came down with it. Now I have got it back again. Not as bad as the last time but coughing and lots of mucous. Josh is pretty sick. :( The home health nurse came out on Monday and listen to his lungs and check his vitals. Another nurse is coming back out this morning to check his lungs again. His lung volume is low and so trying to get a good cough just isn't happening. Plus his ribs hurt from coughing added to the pain from the tumors on his ribs. It just isn't a pretty picture. SO. We'll see. Radiation we well in Medford last week. We had a bit of a scare Thursday night. Josh's right arm was really hurting. He said it felt like the left one did before it broke, so I called the boys in blue because I wasn't going to be the one to transport him and cause his arm to break if that is in fact what was happening. When it was all said and done everything is fine. The x-rays showed the weakening of the bone which we knew of. We came home on Friday. Friday we did get the van I was talking about in the previous blog. Wait a minute. I just realized I already told you about our Medford trip... oh well :) So about the van. We are still taking donations. There is going to be a fundraiser on I believe October 30th. I'll keep you posted on that.

Oh :) I forgot to tell you ...
We are going to Medford tomorrow evening to be there for Radiation consult and treatment on Thursday. We'll be there all day and then home Friday morning. Josh is back on his chemo and isn't doing bad. His arm is healing REALLY quick such a blessing. He has used it a little bit but not too much. He isn't using his right arm very much in hopes of protecting it from breaking. The radiation oncologist is going to radiate both arms and the left femur. I BIG dose. Because it's limbs that are recieving the radiation he shouldn't have many side effects. Hooray!

I have been sick again for the last week. Started with a sore throat and then the cough started hours later. I've hacked all week. Thank goodness for Albuterol breating treatments! Finally went to the doc and everything.... x-ray, blood work, lungs all look/sound good. Finally I yesterday I started feeling like a human again. So good in fact I rearranged my living room....followed by a breathing treatment. :) Today a little better. Now the boys both have a runny nose and Andrew is coughing. Poor guys! Josh praise Jesus has not gotten this yukcy bug.
Andrew is having a great time at school. This morning he told me that he just needed to take a BIG rest before he could goto school. And last week he told me he was sick and couldn't go. HUH we still have 13years to go! Once he gets there he is fine. After I took him this morning I came home and told Josh that we are very blessed with a 3yo who gets to school gives his mom a hug and I can say see ya in a while and he's like ok buy mom. Instead of the little boy who is begging his mom to take him home crying not to leave him. I am lucky I am not that mom. I'd be like ok honey we'll go home. :) Have a very blessed day!

We are asking for your help! Josh and I have come to the conclusion that instead of buying a car it makes the most sense for our situation to get a conversion van. Josh's mom and dad have done all of the work and found a van here in town that would be perfect for us.

Wheelchair Conversion Van - $22000 (Access Conversion, Klamath Falls, OR)

"03 Chrysler T&C Van, with the conversions for wheelchair accessibility and transfer to driver seat. Color: Fire Red. Mileage: 51,500 Engine: 3.8 V6 Automatic All Options included: Leather Interior, heated seats, 5-disk changer, power seats, 3zone heat & air, cruise, steering wheel controls, auto headlight system, electric doors, roof rack, dual side sliding doors, passenger side air bags, power mirrors, low profile tires, IMS conversion, drop floor, in floor ramp, kneel system, magnetic entry, automatic 4 pt restraint with sure lock/manual tie down, transfer drivers seat, hand controls (can be removed or driven like regular) back up camera in rear view mirror, automatic start, set of tire chains, no spare tire mount. Very clean less than normal wear. This is a private sale but Vehicle is in Klamath Falls.

As you can see the price of this van is a lot! But when you talk about all the money it takes to make it wheelchair accessable it makes sense. However Shelly has talked to the owner and she is willing to drop the price to 16,000. Perfect! This is where you all come in. We NEED help in purchasing this van. If God lays it upon your heart to help out, even if it's something small. you can make any contributions to our church; Living Faith Fellowship in Klamath Falls and recieve a tax right off. Thanks you for all of your prays over the last few months. Even over the last year. I realized that a year ago today was the day my doctor told me I had to stop working untill Joshuah was born. I can't believe it's been almost a year since I went into the hospital. God has been so gracious and blessed us with so much. This is just another blessing in our lives!

After I read the last post I realized that it was in third person.... Josh posted it and wrote it like I wrote it! SO just so you are all aware he is the one the took the time to update you all. We all have a different perspective on the situation but Josh put it pretty good. Lots of prayers. God is good all the time!!! And he will keep carrying us through these rough times.

The bone scan showed another tumor in Josh's right arm almost in the same spot as the one that broke in his left arm. this tumor is not as bad as the other arm. it has not weakened the arm as much, but it could still break easily. Josh has a brace he wears on it to hopefully help keep it more safe and he cant use his arm like before, so its immobile a lot of the time.

Meanwhile his other arm continues to heal, and he is moving it more all the time. he has it sling most of the time, and then loosens it so he can move it around. it swells and then the swelling goes down with use, but overall the swelling is going down. We work hard to keep it safe and hurt free when we move in bed, or get out of bed.

We have a lift the we used today for the first time. It work pretty good to lift josh out of his bed and set him in his chair. We are thinking about other ways to use it for his benefit.

The bone scan also revealed another tumor in the bone of the left femur that has the capacity to weaken the bone, but it will have to grow pretty good and hard before it would be a problem.

In conclusion, the biggest problem he faces is the medical field, the doctors are starting to want to fight josh on what they will do for him. They keep wanting him to dope up on high morphine, lay in bed, catch a cold , and die. His body is in bad shape, but not bad enough to do what they want.
As sick as he is we believe we have a long time to go before it gets to that point.

Today has been a busy day. Josh's pain isn't as bad as it was yesterday. They have decreased the amount of morphine he is allowed to have, and keeping it under control. He had a bone scan this afternoon to see if there is any bone weakening anywhere else. They will be looking to see if there are any areas that need to be stabilized before another break happens. I was able to be in while they did the test. It was very fascinating. One of the most interesting test I have seen. I was able to see the cancer through out his body. Once the radiologist reads the scan and lets us know I'll post another blog to let you know what it showed. Radiation will be done on his left arm where the surgery was. The radiation oncologist said that he would only need one treatment and it can be done here in K. Falls instead of driving to Medford. Amen! The radiation will kill the cancer cells that are still in the area. Killing the cells will aid in the healing of the bone. It seems that if Josh does the exercises he has been given his arm will recover nicely with full use. Hooray!

Josh's surgeon just came in about 15mins ago. He said that everything went well. He lost some blood but that is common for this type of surgery. He is in recovery currently. Should be back up here to his room within the next 1/2 hr or so. Thank you for all of the prayers. Pray that recovery will be quick and he'll be able to go home sooner rather then later!

Josh was feeling good this AM when I talked to him he said he was going to talk witht his doc when he came in and see if he could go home and just take the laxatives there. Over the last few months Josh will be sleeping and just wake all of the sudden and jerk real hard. Well today when the doctor came in the opening of the door startled him he jerked. Well just that movement broke his left humerous. Long story short it was a clean break and the bone is thin which means the cancer is in the bone and weakened it cause the break. So he is currently in surgery. They are doing the same proceedure they did on his right femur. Rod and pins to stablize the bone. God is in control. And I know he is with the doctors doing the surgery. When it rains, it pours. But that's ok because we have God to give it to and we dont' have to "deal" with it!

UGH!

So because we increased Josh's pain meds he's been fighting constipation which is to be expected. We though we had it under control and then last night he started having sever abdominal pain. The feeling of needing to have a BM. His pain couldn't be controled and the stool softeners and laxative were no longer working. SO. I called the boys in blue about 12:00 last night and they went ahead and brought him to the hospital. We have now been here for about 7hrs. Blood work check, CT check, X-ray check, UA check. Kidney stone! Ouch. Been there done that. Josh remembers hearing this from his oncologist, but the CT showed that the tumor is in the bone of his pelvis which we new that but now it is showing there are fractures in the bones of the pelvis and lower spine. That is all the info we have at this time. Josh is going to be admitted for pain control and when that happens we will learn more about what is going to happen. So please continue to pray for Josh. That he will be pain free and able to sleep. Pray that the fractures that showed up on the CT was a mistake and they are not there, and that the stone will be able to pass easily. We don't have results back yet from the x-ray so pray that is doesn't show an obstruction of the colon/intestines. Just pray for ultimate healing! We've had ENOUGH of this and are ready to be "normal"(whatever that is ) :) Also keep the doctors in your prayers also, that they will have wisdom and be able to diagnose this situation

I was holding Joshy up so he wouldn't roll off of the table. Ya'd think they would have cut me out.


Lovin the dirty fet. Ha ha.

Lead me to the cross where your loved poured out....

That is the song that is playing on KLOVE right now. I love it. For all of you that still read our blog; Thank YOU for your prayers. I know I have not kept up very well with keeping everyone informed about what is going on. There hasn't been any big changes....

Last week we all went to the Josephine co. fair. Josh has been going every year since he was very little with his grandmother and didn't want to miss this year. So we went over on Wednesday. Saw Roy Clark...interesting man. Very talented and funny guy but he is getting there in age. :) We had a very nice time. For the first time since all of our crazy happenings we spent the night in a hotel. It was the first time Josh has slept in a "real" bed in 8mos. Needless to say he (we) didn't sleep that night. It was nice being able to roll over and he was there but it was just too uncomfortable for Josh. The hardest part was not have a trapeze bar above the bed for him to move himself around with. All in all we made it happen. Andrew stayed with us, he slept on the floor...started out by the T.V. in his sleeping bag and ended up over by the bathroom. It was cute. He asked if it was our new house. Huh, uh, huh huh...... or not. :)

On Thursday Josh had an appointment with his oncologist over there in Medford (that's why we spent the night). She wants him to stay on the Sutent for now. She said that it's still showing progress and until it stops he will keep taking it. I was pleased with that. Like I've said before, when he is on the chemo he feels "alive" feels good. He has been off of it for almost two weeks now. The time hasn't been great as far as pain and discomfort. We will be happy when Saturday (tomorrow) comes and he start his next round of the Sutent.

Andrew has been in Eugene all week. Spending time with Papa and Nana, Uncle Gregory and Auntie Jenn. And whoever else wants him :) He is making the rounds. Spoiled! I am jealous OK! He thinks he is Andrew Charles Buster... I wonder who put that idea into his head DAD! Or was it Uncle ROBB? It sounds like he is having a great time. He starts pre-school next week. He has been going all summer but now it's school time and not just play time. We are going to keep the same scheduled he has had. For now. There is a song that Josh and I made up for Andrew, it's starts off "have you seen the most beautiful boy in the world?" Every time Josh or I start to sing it Andrew smiles from ear to ear. He started singing "have you seen the most beautiful daddy in the world" It's kind of become they're song. It's oh so very sweet. Once I can video them singing I'll post it. But every time Andrew sees I have the camera he stops and says cheese and then just wants me to take pictures. He doesn't understand I am making a "movie" of him. Silly boy.

Mr Joshuah is going to be 9 months on the 5th. I can't believe how fast time goes. He is now holding his bottle on his own. Sitting up mostly by himself. That is until he tries to look at something that is to the side and then he falls over. He is now getting up on all fours and rocking back and forth. It is so close to crawling! Over this time his brother has been gone he has become very verbal. He has found his voice! So much fun watching him grow. He is starting to wave. We will wave at him and then very slowly he will look at us, look at his hand and move his wrist around. The parade wave. :)

I have been keeping busy. Surprise. Bet you weren't expecting that one were ya? I am still at the clinic Friday afternoon's and Saturday mornings. It's a nice lil break from home life. However it is the end of the summer and everyone is just realizing that kids need physicals for school so now we are cramming them in wherever possible. It's all good though. I have made the commitment to keep my Mary Kay business going. I really enjoy the whole MK business. Meeting new people, parties, girl time, making women feel good about themselves. The opportunity is so great. I can work when I want. Have as many or few classes I want to hold. No one to tell me I HAVE to be somewhere. And I can go as far up in the business as I want. My long term goal right now is to earn the use of my first Mary Kay car by my 4th MK anniversary in June. Fun stuff I tell ya.

Things change everyday. I am excited to see what God has in store for us. He is our comfort. He has healing in mind I am sure. We just don't know what he is waiting for. All in God's timing. Right? We are so blessed to have one another, to have our family together almost 9 months later. We have a roof over our heads and food in our tummy's. It's a lot more then what some people have. I wish every was as blessed as I am! All glory to him!

It has been a crazy couple of weeks. Josh had his CT done and in the doctors words it shows that most of the tumors are stableized but some are growing. The tumors on his spine, in his abdomin and the linings of the lungs. Not horrible news but not the greatest. He is on round three of the Sutent (chemo). Bad days and good. Yesterday we had an open house (nobody showed) and therefore we couldn't be here for a couple of hours. We wend out to lunch with papa Chuck and gramma Eunice. It was nice to get out of the house. Today Josh got to sleep in a lil and we woke wanting Denny's for breakfast/lunch so two days in a row we all got out of the house for awhile. He now sleeps. :)
Andrew came down with a cold a couple of weeks ago. Gave it to me and one of us gave it to Joshy. Andrew got over it pretty quick. Still has a bit of a cough. I went to the doc twice first time everything was fine and the second time I was diagnosed with HIB (look it up) :) Got on a antibiotic and am feeling much better. Joshy however has been on two different abx and today for the first time is actually starting to act like himeself again. His cough sounds HORRIBLE and he dosn't sleep very well at night. I hope that this week is the start of health and happy boys and LOTS of sleep!!!
Josh has an appt with Dr. Kohler in Medford on the 20th pray that we will find the car we want before then!

We praise him in the storm!

Here are some misc pictures. I realized it's been awhile since they were updated! Also here is the link to the pics that I just had done of the boys last weekend if you wanna see the proofs. Enjoy!

http://portraits.pictureme.com/PR3/orderpage.aspx?pi=YCO8001I000000&po=0&c=3DJ96V




I love piggy toes!!! See the silly middle toe on his right foot. he he

I love this man!

He he. Papa, Joshua, Cousins Sydney, Shanna and Calvin.

All of the kiddos sleepin in the tent. Even Andrew stayed there ALL night.

No comment

Joshuah and nana. He had gone to bed at 8:00 and then awoke to all of the noise. He wasn't sure what to think about everything.

All the kids were so excited to do fireworks. Here the are watching the famose black ugly snakes. whoo hoo

Joshy enjoying being outside with everyone.

He just got a bath and then decided he was going to sit in my flower beds and make a dirt hole. Nice Andrew.

Shanna putting the tent up, with the "help" of the lil ones.

4th of July!! Dad, Shelly, Roy and Josh (duh) :)

Yes I let my child fall asleep in the bathtub. Yes he was supervised!

Andrews first skate board! One his of his surprises for getting 3 stars on the calendar for not wetting in his pull up!

Andrew thinks that whenever I turn on the sprinkler is for him to play in.

Father's day. Breakfast in bed with daddy. First off peanutbutter cereal.

First day of "school" yes in the summer!

Ok so because we didn't see Dr. Kohler in Medford yesterday I was able to talk with her on the phone for a little bit to go over all that was suppose to be discused.

She said that Josh's lab work looks good. His cell turnover rate? was good and that was encouraging to her. She said that areas of his labs that she had been watching because they were out of range is starting to look a lot better. AMEN so does that mean the chemo is working and the cancer is going away? We don't know and she didn't say that. I don't blame her. CYOA. Dr. Kohler said that Josh counld start working on standing with his leg braces if he wants. Last week she said she didn't want him doing any physical therapy more then range of motion which is what we are already doing with his leg exercieses everyday. She is concerned that the large tumor that is in his abdominal area is weakining the pelvis and she doesn't want to put anymore strain on the area then there has to be. Anyway! He gets to work on standing HOORAY! Josh has a CT scan next week to check on things. We see Dr. Kohler next month on the 20th.
Josh is still felling pretty tired and run down today. Had a better night. We ALL slept ALL night. AMEN! He will start back up on the Sutent within the next couple of days. Keep us in your prayers.

Does everyone agree with me that it is time for healing?!?! We had a rough night last night. When Josh is off of the chemo he feels pretty crummy. Everything hurts, he is very sleepy and just uncomfortable. When he is on the chemo he feels good. He suppose to start his 3rd round of chemo tomorrow but he was suppose to go to the doctor today in medford to work out all of the details. Josh's insurance was changed to a managed care plan and they are not paying for the chemo and at 7500 per round we are praying he qualifies for patient assistance. So I am waiting for the doctor to call me back regarding today's apt. Because of the lack of sleep we got last night and the discomfort Josh is in we obviously didn't make it to Medford.

The boys are doing well. Andrew is loving school, and so am I :) He plays outside as much as I'll let him. I am still not to comfortable with him going to the neighbors unless I am outside to keep my ears open. The neighbor kids love to come over here though and play on the swing set even when Andrew is not outside. I put a stop to that one.

Joshy is such a happy boy. Eats sleeps and plays. He just took a cat nap on the couch and has woken up. Instead of crying and wanting to be picked up he is just laying here talking and kicking his legs. Sweet boy. He finally has started rolling from him back to his tummy and I find him more and more sleeping on his tummy. Scary

May the Lord bless you and keep you strong. Enjoy the beautiful weather but remember to stay hydrated :)

"For I know the plans I have for you," declares the Lord,
..."plans to give you hope and a future." Jeremiah 29:11

Wow where has the month gone? So sorry I have not been keeping the blog updated very well lately. Josh is on his last week of his second round of the Sutent. So far not many side effects this time around. His mouth is a little tender but not as bad as it was last time. This month we went to lunch once and last week Josh and I went to lunch AND to a movie all in the same day! However the next two days he slept and he was sore from getting in and out of the car, and that is why we are still looking for that perfect car with big doors so it's easier for him to transfer in and out of the car. We are searching for a '00 or newer Chrysler Concorde with tan leather interior for under 4,000. They are out there just not in our area currently. So if you know of anyone that has a car fitting our needs let me know! :) Josh finally feels up to starting physical therapy again. We are just waiting now for orders from his oncologist. His hair color that was turning gray/blonde is now back to the red/brown it was to begin with. We figure it was the Sutent that was causing the change.

Andrew has started going to school two mornings a week. LOVES it! And so does mom! He takes a good nappie when he comes home! It's nice because the school/daycare is just at the end of our road so we get to walk. He enjoyed going to VBS this week and I guess was pretty darn cute during the program last night. I didn't get to go cause I had to work. But thankfully gramma tapped it for me. He is still pretty sassy and independent, and strong willed but we are taking things one day at a time around here. No other way to do it. It seems like all he wants to do is play with his friends. Which is fine with me but when he come to ask if he can go next door to they house and jump on the trampoline my heart starts races and so bad I want to say no. Instead I say yes then stand on our side of the fence where he can't see me and watch until he is ready to come home and then I run back to the house and act like I don't know anything. He is sitting here on the table next to me telling me stories which just reminded me about his friend "fella" Andrew said "you spell it like this mom g-r-s-w-y" (when I asked him what his friends name was) anyway, Fella first showed up the other day. I was in my bedroom getting dressed and Andrew comes in "mom Fella is behind me, WHOA mom he scared me I turned around and he was right there..." At first it was kinda creepy. Then Andrew told me how Fella made a neckless at VBS too and how he is Batman and Fella is Spiderman. Interesting I tell ya.

Mr. Joshuah is my lil baby chic. His hair is finally long enough it doesn't stand strait up and not long enough to lay down so he looks like a baby chic. :) Still has strawberry blonde hair. On Thursday he rolled over from his back to his tummy. Of course nobody saw him. I made such a big deal about not rolling over for anyone but mommy or daddy and well I had him with me in the kitchen and I walked away for two mins to help Josh when I came back he was on his tummy. He panicked once he got there. So the rest of the night we had him on the floor in the living room with us in hopes he'd do it again...sure enough he did. :) I am so proud of him! Next goal sitting up then we'll talk about teeth! He is very happy and loves to watch his brother. It's sweet in the mornings after he has had his breakfast I'll lay him on Josh's lap with his bottle and every time he'll go to sleep. I call it his daddy's sweet spot. :) It was oh so sweet on Wednesday morning both boys were on Josh's lap and they were watching cartoons. It was picture perfect, that was until I got the camera.

I love my boys. All three of them. Time just seems to be going way to fast. I can't believe it's almost July. God has brought us such a long way since the beginning of this craziness we now call life. Things are looking up and we haven't had many bad days. All the thanks goes to our Lord!

OH he he he Jennifer is pregnant and that means I am finally gonna be an auntie!!! :) Not for about 7 more months but I can't hardly wait!!!!

This is one of my MOST favorite songs in the whole world. The first time I heard it was when Josh and I were in Atlanta for the Exchanged Life confrence back in May of '07. And ever since then evertime I hear this song God just speaks to me. It's like he is say I am here and I will never let go of you! I heard it on my way to work this morning and it was a good start to the day...(better then the head ache I have) If you have never heard it before just goto klove.com http://www.klove.com/Music/LyricSearch.aspx and you can listen to a sample of the song.


Matt Redman - You Never Let Go

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle of the storms of this life
I won’t turn back I know You are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Chorus:
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know
You here on the earth

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

Just a quick update..

We went to Medford yesterday to see Josh's oncologist. In a nutshell the CT he had done in April compared to the one he had done this week showed no growth of the tumors in his thoracic cavity(the scan was only done on that part of the body). AMEN! If anything they have gone done in size just mm. It could be the Sutent or the difference in CT machines or just a God thing ;) But it's given us a little bit of hope! Josh started his second round of the Sutent yesterday. Pray that his mouth won't get as raw this time around. It was pretty tough last month. He has had a couple good days in a row now which is a nice change from the bad days he was having. He and Andrew were playing Batman and Superman this morning...it was cute. I was in the kitchen making cookies and Josh told Superman that Robin was in the kitchen and to go give her (cause you know Robin is a girl) a BIG kiss! It was sweet. Joshy is usually Robin but this AM he just hung out and watched Andrew run back and forth, back and forth, back and.....well you get it.

Josh has been having a rough week. He has been off of the Sutent for almost two weeks now. We thought there would be a scan to see if there was any improvement, when we called his doctor in Medford she said usually they do two rounds of the chemo and THEN a scan. Huh, thanks for telling us that earlier. So now he starts round two on Thursday. Four weeks on then two weeks off. THEN a scan. However. Josh has been very uncomfortable and in a lot of pain the last few days. I called the doc and told her we wanted a scan now instead of waiting. The tumor on the top of his head and on the side of his head that were the last to receive radiation are visible again. Josh feels like the other tumors are all growing also since all of his pain is where ever he has a tumor. So he has a CT on Tuesday to see what is going on and to see if there is anything that needs to be taken care of. He also has an apt. on Thursday with his oncologist in Medford. Not sure exactly what for but she wants to see the whites of his eyes. He seems to be in good spirits. Good days and bad. Defiantly being carried.

We are praying for a new car to come our way soon. Something with AC, leather seats and large doors. :) All will make it easier for Josh to travel. We have a potential car we're looking at tomorrow. Pray for the best.

I have spent all week working outside cleaning things up around here. I hate the heat but enjoy working in the sun. Only one day did I BBQ myself. And yes I've heard of sunscreen and yes I had it on!

Andrew has enjoy playing with the neighbor kids. Everyday it's "mom can I go to my friends house?" My 3yo wants to know if he can GO TO HIS FRIENDS HOUSE!!! I am soo not ready for this. Do you know that they have a trampoline!?!?!? The first and only time HE went over to their house (they usually come to our back yard) this week I stood on the side walk and watched him for about the first 20mins he was there and then went back to check on him like every 5. He is such a big boy these days. We were in the grocery store this evening and like every time we are there he had to go potty... so off the the restroom we go. To make a long story short he now knows what the word echo means and everyone that was in the store I am sure now knows that he knows. :) Oh and really for the first time I dreaded walking past the toys...."mommy, mommy I want this, can I buy that, can I can I?????? Three is a fun age. Isn't it. Andrew was diagnosed with pneumonia last Sunday. Needless to say it didn't slow him down a bit! The only reason I took him to ER was because he was grunting with EVERY breath and well just not really breathing all that well. He is all better now. I hate to admit it but I was kinda looking forward to some snuggle time while he was sick....but I didn't get it cause like I said the sickies didn't slow him down.

Joshy is still growing like a weed. He has his 6mo check up next week. Cooing, and laughing. Lots of smiles. Trying oh so very hard to roll over. He is a thumb sucker and so usually what stops him from getting all the way to his tummy is his thumb in his mouth. I just love my boys. So much fun to watch them grow. It just happens waaaaaaayyy to fast as I am sure all of you who have kids know this my now!

Only one set of footprints in the sand...

My first time at the blog. its me Joshua. I hope i do it justice as wife has done such a good job so far keeping all informed. well i guess i will just dive right in. God is good all of the time, Amen. Even when i have weak days, painful days, and wish this would all just go away God is still at work within. When we are weak he is strong, and its in our weakness that his strength is made perfect. The thing that i love most about Jesus is that he is a win, win saviour. Ask yourself what is the worst that can happen in this life. Most of us would say that the worst thing is that we should die; but even in that we win because he has conquered death and prepares a place for us. Oh death where is your victory, of grave where is your sting? I'll be the first to admit that I don't look forward to pain, but again when I exchange my strength for his he seems to make all things bearable. Its as if he gives and extra measure of grace to compensate for what we lack in ourselves so that resting in him we never lack!! Hallelujah Amen to Father, Son, Holy Ghost forever.

Well yesterday was my last day of Sutent Chemo pills. I now get two weeks off in which my oncologist should order a cat scan to see if any of my tumors have changed or were affected. I hope that my mouth heals up soon, its been hurting so bad even water makes my tongue sore. I suppose if that is the worst side affect that i have then that's okay.
My insurance has been fighting against me getting a custom fit wheel chair. It looks like my doctor went to bat for me and really told them how much i need it. So hopefully i will have it soon and be able to get around better. It is really light, has a highly adjustable contoured back, and is candy apple red; wow what a hot ride, stay off the sidewalks!!.
The rest of the family is doing fine. Jenae is working hard to take care of kids and chores and so on. We are grateful to have help come in twice a day. The help does change every so often, so it seems we get someone trained and then they are moved and we have to start all over again. I am so grateful for my wife. she is the best. She takes such good care of me and our family, and i am proud to have her by my side for better or worse; her love means the world to me.
Andrew is just as hyper and on the go as ever. He is so much fun, and so much work. We are told that he is just a typical 3 year old, and i think that is right.
Baby Joshua is growing like a weed. He just started eating some rice formula with his milk and he is taking to it well. Mom cant get enough kisses, hugs, and squeezes out of him as she turns into a high pitched silly faced person herself. She will do almost anything to try to get a laugh out of him. I wish i could hold both of them more but i hurt too much to hold Andrew and can hold Joshua for a limited time only.
In closing i would just like to send a special thanks out to my church family. I often find myself speechless when i consider their care, love, and prayers. They never forget about us, and keep working to raise funds to pay for my cancer bills and other bills. I know that God is and will bless them beyond what they can bear. Well until next time, God bless and rest in his perfect peace that passes all understanding

Bare with me...I'll post an update soon!

When Jesus heard that, he said, This sickness is not unto death, but for the glory of God, that the Son of God might be glorified thereby. John 11:4



We are tired of waiting! God is doing something amazing in our lives, in the lives of others. It's time for a change. We are ready for God to heal. We have been ready since day one but it's time. We give thanks to our God for what we are blessed with. For the time we have together, the roof over our head, food in our belly, our children, our families! So many things to be thankful for. We are ready to bring glory to God to give HIM all the credit for healing! Our prayer is that God will bless the Sutent (chemo) and use that as our miracle.



Josh hasn't had many side effects to the Sutent. He has c/o having a raw mouth. His taste is really off. He was saying how bitter an orange was. I thought that was odd and thought that maybe it was just a bad piece. So the next time I cut one up for him I tasted it. It was oh so very sweet and yummy. He said it was bitter with no flavor. :) He feels dizzy/lightheaded (feels like his balance is off) when he sits up on the side of the bed. It passes quickly though. Other then that I don't think he has had any other problems with the drug. He has however been more achy the last few days. Tonight he said his skin was starting to hurt. I laugh because so many times I have c/o my skin hurting and he just doesn't understand. Well now he does. I don't like all of this but I think one of the reasons it is happening is so that Josh will have a little bit of a better understanding of how I often feel. It IS just a small reason, I know there are many. He has good and not so good days. He is doing a good job at pushing himself to get out of bed EVERYDAY and to stay on top of his bowl care. Fun stuff.



I have started back to work. Just a little bit here and there. It feels good to get out and have a change of pace. Lately if I go anywhere it's usually to the grocery store. I know your so jealous! :) Don't you just wish you we're me???

I want to hear from my readers! Leave me a comment or email me.
Lokua02@yahoo.com

I've heard this song on KLOVE many times. I've always liked it, but it's never been one of my favorites. I was in the car yesterday on my way home from grocery shopping, feeling horribly yucky when this song came on the radio. For the first time it spoke to me....no God spoke to me through this song. "I will carry you through THIS storm!" and therefore I will praise HIM through THIS storm!


Casting Crowns - Praise You In This Storm

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

As the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

Chorus:
I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can’t find You

As the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The maker of Heaven and Earth

Holy cow! Another week. Where did it go? Would somebody PLEASE slow down time? Okay where do I start? Well currently Josh and I are at the hospital her in K. Falls. Josh is sleeping while receiving a blood infusion. Low blood count again. The doctor blames it on the cancer. We finally got an MRI done of Josh's knee and have yet to hear anything. No news must be good news? The CT that he had done last week of the head for his grumpy eye came back and we have heard back on it..........the tumor that received the first batch of radiation that was above his left eye is back or well growing again and being aggressive. At one point I heard Josh say that it was going through the bone but now I just asked him and he says "I don't know" so I guess I'll be calling the doctor this week. We, well the oncologist...Dr. Kohler in Medford thinks that Josh's knee pain that he was having (not so much anymore) is from the tumor that is in his abdomen. It seems as though it is connected with the tumor at L4 that Dr. Ching was unable to remove back in January. The two together are putting more pressure on the sciatic and other nerves that in turn caused the knee pain. But I'll getting details on that also. Josh did start the Sutent (chemo) last week. So far he isn't experiencing any side effects. Praise Jesus! I think we've finally found an antibiotic that is going to kick the persistent bladder infection. Hooray! His temp has finally dropped below 100. He is back on steroids to help with any inflammation that could be causing the knee pain. I think it's good for him anyway. It makes him feel a little bit more normal...or at least act like it. However over the last 4-5 nights he has had a bad cough and hasn't gotten much sleep so he has been sleeping most of the days. Normal? I guess it could be. :)

I have been feeling much better. Sinus/cold issues currently but better then the back issues. I am not doing much lifting in hopes to save the strength in back I still have. I have come to the realization that Joshuah is getting to heavy for me to carry him in his car seat. He is almost 15lbs, and trying to carry him one handed, and dragging Andrew (Batman these days) with the other hand and then the bag I call a purse it's no wonder my back hurts. My 3 year old Batman has enjoy jumping off of EVERYTHING. I've learned that when he says "hey mom watch this" I don't want to watch. I am ready for a house that doesn't have stairs. He jumps five, six steps up...I thought about putting the baby gates back up but yeah well he'd just JUMP OVER THEM! He he...I love my boys!

BEING CARRIED!

It was just brought to my attention that I haven't blogged since last Wednesday! So sorry! It's amazing how fast time goes when your having fun....or not. My head ache finally went away. I had a MRA on Friday, went back to the doc yesterday and the test came back normal. Hooray! However I am having lots of sciatic pain. The doctor gave me a muscle relaxer that just helped me sleep last night and really didn't help with the pain. I was able to go back and get some more acupuncture today. RELIEF! Works sooo well. I am so relaxed and not having as much pain. Oh the wonderful world of muscles.
Josh spoke with his oncologist on Monday, she really wants him to start on a chemo. Josh said that if he WAS going to do it that Sutent would be the drug of choice. It arrived in the mail yesterday. The Sutent is a once a day oral pill. Low side effects and is suppose to be pretty effective on vascular tumors. Josh hasn't started it yet. He wants to talk with Dr. Said (herbalist) in Medford first. I told Josh that at least with the Sutent if he starts it and he doesn't like it at least it's something he can stop taking. Josh had a head CT done yesterday. His left eye is puffy and droopy. Pain when with movement and he has been having some headaches. His left knee is also really bothering him but we are still waiting to get orders to have that scanned. We finally got some caregivers coming in. They come in for a few hours in the mornings and a few hours in the evenings. It's been a HUGE help! I am able to focus on my kids and my husband more then my laundry and my dishes. They help out with Josh, the kids and whatever! It's great.
Josh is currently sleeping, Joshuah is laying on the couch next to me telling me stories, trying to push himself off the couch and Andrew is suppose to be upstairs taking a nappie. However, I can here the pitter patter of his size 6 feeteez up and down the hall. I am trying to decide if I want to take advantage of the quiet time and watch a movie and take a rest myself with the chance that as soon as I get settled Josh will awake and need something or shall I attend to the filing and the putting away of the laundry????? Decisions decisions.....

Well I went to the doctor today. I have to stay down for the next 48hrs. If my head ache isn't going away by my next apt on Tuesday then we'll talk about the patch to repair the puncture site. It's a crazy thing. God's way of saying slow down and let go of being in control. I have an MRA scheduled for Friday. It will check the vessels better then an MRI. Josh is laying in his bed, I am laying next to him on the couch. Josh's mom and dad and are here helping with the house, and currently there is a care taker here who just started today. It's amazing how things change from day to day. I honestly didn't think that Josh and I both would be down. The boys are having another sleep over at auntie Sharla's. Joshuah is just starting to cut his first tooth. Is still a very happy boy. :) Andrew is crazy as ever doesn't know the difference between an inside and an outside voice. Silly boy. Josh once again is having tummy problems. Working on bowl care today. Crazy world we live in!

Just a quick note. I am STILL fighting this horrible migraine. I was back in ER last night because my limbs and mouth went numb. The doc said that it was probably an anxiety attack...WHAT? Well I got anxious when my mouth started swelling....but the cause was the anxiety??? yes I am confused. All the symptoms went away. Thought maybe I was having a reaction to the Darvocet but yet he told me to keep taking it along with Hydromorphone for the pain. CRAZY I tell ya! So any who still have pain and still on drugs. I had some more acupuncture done today and it help a lot. The pain isn't sooooo excruciating when I stand up now. I have a doctors apt tomorrow. Not sure what for but maybe they can help me figure out what is going on. During one of my trips to the ER they said that the head ache was from spinal fluid leaking at the puncture site and if it didn't stop then they would have to go in and block it. WELL. If you remember, back in November the reason my doctors didn't want to do a spinal for my c-section was because of the risk of bleeding and having to do the block. huh. I obviously wasn't thinking about that when there was a chance that there was bleeding on the brain now was I. Please keep us in your prayers. It seems as though times are getting better and then something like this knocks us down! Way down!

No change with Josh much lately. He has been sleeping better and I think overall feeling better since we switched him to a raw vegan diet. It is crazy this vegan thing but I kinda like it. A LOT of preparation. There is ALWAYS something going on in the kitchen. Josh has been putting more and more weight on his legs. Doing more squat pivot instead of using the transfer board. The radiation he just got done with hasn't affected him like the last time. No real visible change yet in the tumors on his head.
On Friday I went to the ER again! My right hands went numb, went away then my vision in my right eye got blurry, that went away. Then I wasn't able to talk very well. Couldn't get my words out. So to he hospital. Surly that doc thought it was a stroke but the head CT, chest x-ray, neck CT and spinal tap all came back normal! Once again no bleeding on the brain. As far as we can tell anyway. So I was either to drudged to remember or I wasn't told, but I guess after you have a spinal tap you are suppose to be down for like 12 hours. Well I wasn't. Got home from the hospital 5:30 yesterday morning. Woke at about 9 with a worse head ache. Stayed down most of the day then was able to get up and move about and have some dinner. HA came back and my lower back has been really sore so I took some pain pills and went to bed. Thankfully Jennifer was here, I was able to get some rest, but when I got up this am I still had a bad HA the worst I've ever had. SOOOO back to the ER. I love IV pain meds. Instant gratification! The doc said I have a HA from the spinal tap. Gave me the meds and some fluids and sent me home to bed for a few days. Crazy I tell ya.
My dad and Marge, the girls, Jenn and Gregory and cousin Tamara and her hubby Andrew all came down for Easter. Uncle Erick and Aunt Sharla along with Josh' parents are all here. We celebrated Andrew's birthday last night. He finally got his pink superman cake. Actually it was pink cake with white frosting and big red A. It was cute. he had a great time.
Okay so my pain meds are finally starting to work so it's off to dream land I go. I'll try to get something more posted again soon.