Here we are again...in Radiology waiting for Jon's MRI. I can't believe we are already 3 cycles into this treatment. Time seems to fly by sometimes. We start this cycle of chemo tonight. I guess you could say we are plugging along. I guess we don't have a choice but to wake up each morning and live the day we are given. Honestly, there are days when I would prefer not to wake up. But by the grace of God we make it through one more day. One more hour. One more minute.

Its been a rough week. Jonathan has entered a manic cycle again. This morning he was awake before 4 am. The melt downs are more frequent and more severe. The mood swings are almost constant. Its scary. I am not sure what we are going to do. The options are hard. Continue to live life the way we are and hope that everyone makes it through in one piece. Find some kind of respite that gets Jonathan out of the house during those high stress times of the day. Consider inpatient hospitalization until they can figure out how to stabilize him. These options scare me. I am not willing to give up yet. I can't relinquish my child to someone else. But still the problem remains...how are we all going to live through this and maintain some sanity.

One option that I have found that I am ok with is respite. The problem of respite is money. There is a facility here that Jon has gone to and does really well at. But even though it is on a sliding scale fee, it still amounts to more than I have. His medicaid waiver will pay for some respite but no one in town will take it because the reimbursement rate is so low. I am trying to figure out a way to work out Jon going at least three days a week during the summer to Zach's Place- the center that provides respite. It would probably cost $60 a week but it would be worth the cost if it prevented him from being hospitalized. It would be worth the benefit. The hospital is trying to help us out as well. Please pray with me that God will provide the money for this.

I am afraid that without some relief, our family is going to crumble. I have not felt this unable to cope with Jonathan in so long. It is such a tormenting, desperate feeling to need help and have no way of getting it. No one knows what to do to help him. The drs don't know. Medication is not working. I don't know how to explain it....yesterday, I felt so overwhelmed after 3 meltdowns. I just wanted to feel sorry for myself but I can't. I have to do something about it.

I know that God wants to use all of this for his glory. I know he has our best in mind. I know that his love is perfect and able to cast out my fear. I know all these things. I just need to see it. I am praying for God to open my eyes. I am praying for God to grant me his supernatural strength, his perspecitve, his peace, his patience, and his creativity. I know he will provide. He has to. He has allowed this disease to invade our lives, so I have to believe he has a plan and in his time he will deal with it.
Thank you for joining with us and supporting our family with you love, prayers, and encouragement.

Fun with Friends and Family!!!!!
My sister and her three boys have been visiting with us for the past few weeks. It has been so much fun to be together and get to know each other better. Her husband finally arrived to spend this last week with us so we all got together for a night of fun. It was so special to all be together, along with several old friends from the past. All together we had 8 couples and 17 children!!! I could not have been any happier!

Alex's Lemonade Stand
Our homeschool co-op did a lemonade stand for the Alex's lemonade stand event. They chose to do it in honor of Jonathan. We spent the day there with all of our friends. Jonathan was so excited to see his friends from school..especially one of his best friends Dakota.

Some pictures from Camp Wapiyapi: I am waiting to get the pictures the kids took and the pictures from their companions. But here are a few of when we dropped the kids off.

The Sweetest Hockey Player Ever.... this is from the last tournament a couple of weeks ago...gold medal winners!!!

Its been a while since I have updated this blog. There has been so much going on. Unfortunately, there is so much I can't share. I want to. I want so badly to be able to put words to all that is going on in my life and my heart. Some things are best left unsaid. I am so thankful for all of you who have continued to pray for me and my family and to encourage me with your words even though you have had any idea what has been going on.

I want to tell you that we are ok. Its been an emotional roller coaster these past couple of months. A lot of stretching and growing spiritually. I am sure that as time goes on I will be able to share some of this. One thing is for sure... I am so thankful that God is my solid rock. He is unchanging and always a refuge for my wounded heart. Without him my heart would surely die.

The kids just had an incredible time at camp. The companions they each had could not have been chosen any better. They really touched my kids lives and from what we heard when we picked them up- my kids touched theirs. It brought tears to both of our eyes when we watched the interactions and heard the stories about how our kids "made" the camp, how incredible my kids were, how Jason kept everyone laughing and never stopped smiling. We all cried as we watched the kids and companions cry as they said goodbye. I am so thankful for this camp. I think in the near future these people and this camp will become even more important to my three "cancer" siblings. A lot of the companions are either siblings or survivors themselves. They have walked the road my three have to walk and I pray that somehow the influence of these new friends will make this road a little easier.

It was really hard for me when they came home. I wish there was a way we could live "camp life" all the time. Reality sucks. It really does. Within minutes of getting in the car, Jonathan began his melt downs, Jason began crying and had an outpouring of nastiness, and Josh erupted in anger. They were all so tired. But it was not the only reason for the nastiness...it was just a huge reminder of how living with this horrible disease and its aftermath has affected us all. I keep trying to figure out a way to rescue everyone. To help each person make it through this time unscathed. But I can't. And that is what makes this even harder. Its like watching mass destruction and knowing you are powerless to do anything. It feels like its getting harder and harder for me to cope with Jonathan. Joshua. Jason. and Brittney. I desperately need to be able to point them to the true rock because this mom will never be a rock that can be depended upon. I am crumbling.

I guess the details of the past few weeks don't matter so much. Its the lessons of obedience that really matter. That's what has been so emotionally hard lately. Lots of situations where I needed to obey God despite the outcome. Lots of risks. Lots of consequences. Sometimes following God is not easy. Sometimes you look like a fool. Sometimes God calls you to do something, and you take off in that direction only to have him change your path halfway through making you appear as though you truly didn't hear God right the first time. Sometimes you have to step out and be vulnerable even when the other person is not willing to be. Sometimes you have to stand up for whats right knowing it will cost you...maybe even cost you your siblings, your parents, your friends. Sometimes you have nothing left but knowing you heard God and that you obeyed him. sometimes you have to let go of another person and trust that God is able to rescue them. Sometimes obedience costs all you have.

So that's where I am tonight. Broken. Sad. Hurt. Tired. But totally confident in a God who can do far more than I could imagine.

Even Now...He is in Control.
Life has turned upside down this week. Jonathan had chemo over the weekend. Overall, he did well with it. Now we just wait and let it do its job.

On Saturday I went to the YMCA with the kids.While in the pool, I realized that the diamond from my wedding ring was gone. I have no idea if it fell out in the pool or some other random place.

That evening I returned from running some errands and forgot to lock the car. Sometime in the evening, my purse was stolen from my car.
We went to the 8am service at church on Sunday morning and discovered the purse was gone when we went through the drive through at McDonalds. By the time we got home at 9:30 the thieves had already spent over $500.

What an experience this has been for the kids. They have been upset but it has been a neat opportunity to teach them that God is in Control even when it feels like he isn't it. I have loved showing them that no one can really steal my identity. They can take everything else but not who I really am, and definately not who I am in Christ.

The sweetest thing is this morning Josh said "Mom, you should bible study today. I tried to bible study and pray to Jesus about the robbers. " If this brings my children closer to Christ and closer to each other then it will be worth it.

Thank you all for your continued prayers...it has been a rough week. But we are pressing on.

I was so blessed when I found out that our school co-op had decided to host an Alex's Lemonade Stand in honor of Jonathan. Please check out the link below and see what this is all about. Your donation will go towards finding a cure for childhood cancer. Thanks!
http://www.alexslemonade.org/events/pikes-peak-regional-homeschool-co-op

Tumor was stable!!!! So we press on. Chemo begins Thursday night. More to come later... I must go now and prepare for my sister's get together/shower tonight. Its going to be so much fun.

I have been promising an update for longer than week now. But life has been so crazy that I have not had time to just sit and write. So much has taken place in the past few days that I am not sure I can even adequately share. Jonathan is in MRI right now. Since I made myself leave Mya at home, I finally have some time alone. Its amazing how much easier it is to think when it is quiet and no one is calling your name constantly!

Today we are scanning Jon's brain. Its been about 4 weeks since we discovered his reoccurrence. Seems like it was forever ago. So much has happened. I don't know know what to expect the outcome to be today. I have learned over the course of the past 6 years not to go that far into the future. Too much energy is wasted...too many hopes dashed...too many needless worries. I have been wrong before... not too often but I have been. I do know that Jon is not right and I wouldn't be surprised if there is more growth. We talked about that last night...that's the worst possible news and even that is nothing we haven't heard before. So I am ready for whatever the word is... praying for the best, preparing for the worst.

It will be a busy day today. MRI for 45 minutes. Then to clinic for blood work and exam and to get the results of the MRI. Last will be a trip to the psychiatrist... which I hope will be done by noon so we can make it home before dinner!

We are blessed to have such an incredible team of doctors. Our head doctor genuinely cares about Jonathan and works hard to do everything possible. He gives me the comfort of knowing that he is ready to do whatever needs to be done for Jonathan. Our main nurse practitioner has become an emotional connection for me. She has truly entered into what life is like for us and each visit reaffirms to me that I am doing a good job. She listens to my gut feeling and offers reassurance and help. We all know Jonathan is complicated but they are not afraid of his complexity... instead they are helping to find answers. I know they have spent many hours on the phone with other professionals trying to find answers and that makes me feel at peace with their decisions. Our new psychiatrist, while I was not sure at first, has won my respect when he called me at 7:30 in the morning last week after reading my email to him. I know they care about my child. He is more than just another patient to them.

Many of you have asked about the appt with psychiatry from last week. Evidently, the secretary failed to complete the check in process so the doctor never knew we were there. I am too use to waiting for long hours at drs appointments so I really didn't think too much about it until the dr. came out and got his next patient- 2 hours past the time I had gotten there. They tried to reshedule me and I told them no. I told them I would wait until his next opening or he could see me at the end of the day but I was not leaving. Jonathan has been in a critical stay medically and psychiatrically and I was not leaving until I had some answers. Finally, we got in to see the dr. at 4:30 (we arrived at 1) and at first I honsestly wanted to cry. He started telling me how he thought Jonathan was having a reaction to too many meds. And how he was a conservative dr who although not afraid to use meds was much more conservative in his use. He informed me of all the risks of the medicines and the mortality rate. The entire time I was thinking- I waited this long for this... you have got to be kidding me! I totally know and understand the risks. I know that this medicine is going to affect and possible cause his lifespan to be cut short. But so is his cancer. So is the brain damage. So is the broken thypothalamus that causes his body to crash constantly. Come on, I am giving him poison every few weeks. Hoping it kills the cancer cells but knowing it kills many more things in its path. So honestly I am really not afraid of medicine that will possibly have bad long term affects if it will give my child a chance at quality life now. What good is it to live long if you are unable to function or to remain with your family who loves you.
Tough choices some of us parents have to make.

The appointment did end well though. We decided to try ativan in hopes that it would calm down the impulsive outburst and calm his brain. The dr. also decided to present Jonathan to the outpatien team of therapist and other specialist to see what if any therapy he would benefit from. He hopes that JOn could benefit from some rehab type behavior modification training. Not sure about that one but I will try anything. I did leave the appt though wishing I lived in Denver and not in Colorado Springs. They have a medical day treatment program here. It is school, therapy, and psych care all wrapped up in one. And is specifically for children with medical diagnosis. This could be one of the only opportunities Jonathan could have to go to school and be in a safe modified environment and it would give me the break along with the peace of mind. I am not willing for him to just go to this kind of program in the Springs because it would only be at a mental hospital. This is in the actual hospital so he would be with his specialist who know him. Since this is not an option right now, we are considering the other options such as therapy etc.

The ride home from Denver last week was awful. Halfway home, Jonathan got very angry and out of control when I told him we would have to go to bed when we got home ( we didn't get back until 9pm). He proceeded to draw lines down his arms from his elbows to his fingertips. He scratched deep scratches into his arms and stomach until they bled. He stabbed his pen into his shirt leaving holes. He said awful, hurtful, nasty things. Once we arrived home he continued to be destructive. He cut his shirt into shreds. Threatened to puke in his bed, pee and poop in his pullup etc. Then as I was getting his bed ready he walked up and smacked me. Dana and I had to hold him down so we could cut his fingernails so he wouldn't be able to hurt himself any more. It was a lovely night to say the least.

It was scary though. Because I realized once again the reality that unless we can help this child he may not be able to stay with us for much longer. And that hurts. Its a cruel decision to even have to contemplate.

We started the ativan the next day but it didn't go so well. He become very loopy and acted like a drunk person. His eyes became weird, his speech was slurred, he couldn't walk right. The next day I gave him only half a dose. Same thing. Adding to the complexity of the problem, he started running a fever. It was unclear whether we really were have a reaction to the ativan or if it was that he was sick and crashing and the meds were magnifying the problem. The next day I didn't give him any ativan and he was still fairly letharic and weird. So we held the ativan until he seemed healthy. Last night I gave him half the dose because he started to become very agitated and upset again. This time he did fine and did not get weird. So who knows. He keeps us guessing thats for sure.

I think his MRI is almost done so I better wrap this up. We start our second cycle of chemo again on Thursday night. Hopefully the craziness will subside until then. Thanks again to all of you for your love, your prayers, and your cards and all the stickers for Jonathan. I can tell you the stickers have been throughly enjoyed!

Check out my new photography blog at www.throughtheireyesphotography.blogspot.com

Sorry for my lack of posting. Its been a rough week and the last thing I have had energy for has been to relive the events of it through my blog. I am so grateful for all of you who have been checking in and praying for us and Jon. I know that God is answering those prayers...we are all still here!!!!

Jonathan has been in a manic state for the past couple of weeks. During these times he becomes so hard to live with. He is fixated on things, compulsive, obsessive, irrational, and explosive. We are averaging 20 melt downs a day over any little thing. I can't say no at all without it turning into a massive explosion. He is biting himself, scratching himself, and threatening to hurt himself and everyone else. He says the most awful things that remind us that this is this nasty disease and not our precious child.

We should have had a psych consult while he was inpatient. At least then we would have seen the dr. We have been on a waiting list to see psych for the past couple months. Finally, on Thursday we were able to get the urgency through to the drs. The psych dr. we needed to see was out of town but personally called and opened his schedule for Jon. So we finally have an appt. on May 14th. Should be a long day- chemo starts that day, mri is supposed to be scheduled, and then psych appt.

I am tired tonight so that's all for tonight.

I am working on a new photography blog. I am hoping to supplement our income through photography. I need something I can do from home, with my kids, and around Jonathan's needs.
So, if you are looking for some pics to be done or if you know anyone in the Colorado area let me know!

Jonathan's counts are still within acceptable range. They are dropping and some have dropped rapidly. I am hoping this is as far low as we will go. We talked to the dr. about getting psychiatric help...we have been on the wait list for months. Unfortunately, we should have asked for a consult when he was inpatient. Then they would have had to see him.

The doctor is going to be in touch with the psych drs and hopefully we will get a little more urgent action. She is going to tell them that we may have to admit him for psychiatric care if they can't see him soon. His melt downs are so frequent. Pray that he will adjust and calm down. Pray especially for Joshua- he reacts so angrily and has been so out of sorts himself. Rather than leaving Jon alone he tends to fight back and that escalates things. Please pray for peace in our house.

We go back next Thursday to see the sinus surgeon and the oncologist. Our next MRI and chemo cycle begins on May 14th. Thank you so much for your continued prayers.

Thank you for your continued prayers. Its been a rough couple of days. Jonathan is having a hard time coping with being home from the hospital. The noise has been hard for him to deal with. I think he is in pain and can't deal as well with things. So we have been diffusing one melt down after another.

We are going to Denver today for our weekly count check and exam. I am going to ask them what to do about his outbursts. He threw up last night in his sleep. Not sure what is going on with that. I know that the fighting and emotions that are erupting every five minutes has to stop or I might lose my mind.

Friends,
I know you are all curious about Jon. He is doing fairly well. He has remained stable all day after sinus surgery. So thank you all so much for you love and prayers for him.

I am sad to share that a great conflict has entered my life that I can not share. But I need to ask you my faithful prayer warriors to pray like crazy for God to intervene, for his love to abound, and for his power to be shown. I can't share more than that just please please pray.

Thank you!

Jon is scheduled for sinus surgery today at 8:30.

We are almost a week out from chemo. I am starting to see some of the side effects. Jon has had a headache every day. He is actually complaining of nausea now more that he did while taking the pills. He has a weird look to his eyes. I am not sure how to describe it other than it looks like he is looking through you. When you look at his eyes its like he is not there. His right eye is droopy more than normal and his left eye reminds me of how it was right after his brain surgery. Other than that though he is doing fairly well. He has mellowed out which makes me sad. You can tell he just doesn't feel well.

It has been a rough week. Seems that when it rains it pours around here. Joshua has an ear infection in both ears. Mya has cried and screamed the entire week and has not slept well. Driving home from Denver on Thursday was awful. We hit dense fog mixed with rain, snow, and hail. Since it was just me and 4 cranky children , it was quite stressful to me. Add to that the mixture of tears that had been building up for a week- its a miracle we made it home. As we pulled into town and made our last few turns, I heard a loud popping sound. Turns out the rear differential on my suburban went out. Thank God it happened so close to home! It is in the shop and hopefully will be fixed by the middle of the week. So much for having 4 wheel drive in the snow. =(

Adding to the already crazy events, I took Josh to the dr in the midst of the snow storm. Bravely, I drove to the store to get his prescription. I neglected to turn the lights off in the van while I was in the store. So I came out with the kids in an ice storm to a dead car. Thanks to Shawn and Kelly who came to my rescue- jumped my car and drove me home.

Thankfully the evening went better than the day. Thank you for praying. This journey has just begun and we need the strength of God to make it. I will share more later. I am going to try and get things back into order today. Forgive me if I don't answer the phone- I appreciate your calls and your love. I need a few days to refresh. Love you all.

We are headed to Denver today to follow up with the oncologist. Jonathan finished chemo on Tuesday morning. We start again in a few weeks. We will check his blood counts today. If they are still high enough we will go ahead with the sinus surgery on Monday. This surgery is essential for Jonathan. Each time he gets another infection his body goes into crisis. Please pray that we can do the surgery.

Yesterday we saw the endocrinologist. He decided we will stop the anti-puberty shots and let Jon naturally progress into puberty now. My understanding is that we are hopeful he will grow at least a little if he goes into puberty. This is hard for me to swallow. He is growth hormone deficient. Without growth hormone, he is not growing at all. We were holding off puberty in hopes of doing growth hormone treatment so he could reach maximum growth potential. But now, he will not be able to have treatment for a long time, if ever. While such a small thing in light of all that is going on, it kind of felt like one more option gone. Kind of hit me like one more sign that he is not getting better. My perspective of course right now if off and quite sensitive.

Jon has also lost over 10 pounds in the past 3 weeks. He just isn't eating. I am so thankful for out lovely g-tube! I am thinking I am going to be mixing up some nutrients to pour down that thing.

Got to run get ready to go. I will update once I get back.

Jonathan is home and doing well!