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!

For Sydney:

What a difference today in Jonathan. His whole demeanor has changed. He is almost completely back to his normal self. It is so nice to see him smile and joke around. I am hopeful that they may let us go home today. But if not, it shouldn't be too much longer.

Thank you all so much for your prayers.

This video is not the best quality but I thought I would still share it.

Tonight after he finally woke up. Still not all better but definitely making progress.

During the 7 hours of sleep today that had us all quite worried. He was very lethargic and not responding to us in conversation.

My sister let me borrow her camera today when she came to visit...so I have some pics to share. These are from this morning when he was still pretty awake and with it.