Friday, April 24, 2009

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.

Thursday, April 23, 2009

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.

Monday, April 20, 2009

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.

Saturday, April 18, 2009

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.

Thursday, April 16, 2009

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.

Monday, April 13, 2009

Jonathan is home and doing well!

Sunday, April 12, 2009

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 I have some pics to share. These are from this morning when he was still pretty awake and with it.

Saturday, April 11, 2009

We just finished the midnight chemo dose. This one was really tough. He had a hard time after the first one. But the second one was awful. Shortly after he swallowed the pill, he began to freak out. Clawing his skin, crying and screaming that his ears hurt, his jaw hurts, his ankle hurts. It was awful to watch one minute he was ok the next it was like he was trying to crawl out of his skin.

The doctor came and we gave him ativan. Not sure if its a reaction or what. But in the morning we are going to crush the pill and see if it helps to take it in his g tube.

I am so glad that they listened and agreed to start the chemo here where they can see if there will be any bad reactions. Already there has been more than there was supposed to be to this pill. I would be so incredibly scared to have that happen at home.

Tonight during this episode was the first time that I have actually cried since the news. Its too much to watch and know you have to do it to keep your child alive. Please pray for me and Shawn to hear God's voice in all of this.

Friday, April 10, 2009

I put this video together, at Shawn's suggestion, with the pics I had on my laptop here at the hospital. My brother in law's fellow troops in Iraq were wanting to see the boy who they are praying for.... so this is for them and for all of you! Thanks again for you love and prayers.
We just talked to our nurse practitioner from oncology. Jon has stabilized and he is maintaining his temperature. I have asked for one of two things to happen:

1. If we are going to stay in the hospital, I would like him to start his chemo now. That way we would know if there was going to be destabilization after the treatment.

2. If we are not going to start it until Monday, I want them to let me take him home. I can manage his needs right now. And I know how to get back to the hospital.

So now we are waiting for them to decide. Pray we can go home today. That would be the best thing for our whole family.
Shawn and Jonathan are sleeping downstairs in the PICU. Mya is sleeping next to me in our sleep room down a few floors. I am thankful for this room tonight. It is the first time I have had a private place for the past few days. The minute Shawn walked out to go sleep with Jon, the weight of all today has held crashed in upon me. I don't want to cry. Not sure I will be able to stop.

Like photographs in my mind and on my heart, so many encounters today came together in this new chapter of our story. The pages of today's paragraph are soaked with tears.

Moments like these:

The oncologist looking into the door and motioning me to come out to him. The moment I saw his face and he asked if we could take a walk I knew what was wrong. Sitting next to him as he gently shared what was happening, all the treatment options, and the possibilities of what could happen with each poison we would put in Jonathan's body, I kept wanting to tell him to stop. I didn't need to know all the details. I wanted to cry. I wanted to call my husband. I dreaded calling my husband. Now the past two times that we have been told this awful news I have been alone. There is nothing worse than being the one calling with the news or being the one on the other line hearing it though the phone.

In this moment though I could hear the Lord reassuring me that HE was here.

I went back in the room and told Jonathan what was happening. His response was classic Jonathan: "" but like a simple child full of so much simple trust and faith he went right back to his stickers, glitter, glue, and coloring. Oh, how I wish I could be like him- able to take each bad thing that comes my way with such faith. He didn't need to worry. He knew his mom and dad and the doctors would take care of those things. He looked at what was coming and looked beyond the circumstances to the future....of course in this case it was STICKERS. He told Shawn basically it was ok to have to do chemo again becuase he really likes the stickers he gets.

In this moment, I saw a glimpse into how it could be in my relationship with my heavenly Father. Sure things really stink at times. They hurt. They disappoint. They leave us scared. But my Father in heaven wants me to know I can trust him to have it all under control. Despite the circumstances his love and his faithfulness never changes.

I have been so blown away by how God has provided us with so much support. My precious sister in law who lives far away had already arranged meals for my family by the time I arrived in Denver. My phone has been ringing off the hook and text messages have flooded me with so much love and support. Friends from everywhere are praying and I know that God hears. Tonight my "second mom" came up and stayed at the hospital with Jon so Shawn and I could go eat. This was such a blessing. I am in awe.

Even here God has reminded me that he will provide for our every need.

Tonight my heart broke as I saw the tears in my husband's eyes. He looked at me and said, " I wonder how long we really have left with him." We talked about how much guilt we would feel if he were to die. Life with him has been hard. Sometimes we get frustrated. Somethimes we don't always respond to Jon the way we should. We do the best we can but sometimes it just doesn't feel like it is enough.

Through my husband's tears, I was reminded how God is able to guard our minds and give peace that passes understanding. I don't know why we were chosen for this path. I don't understand why this happens. I don't really know. I just know that God is in control and he loves us and our children more than we could ever know.

This afternoon the sweetest EEG tech came back to check on Jon's EEG. She brought him a card and present. Jonathan had been painting ceramic figures last night while she was hooking up the EEG machine. She went home and painted 2 figures for Jon and brought them too him. He gave her one of his figures. He had touched her heart in the short time he had with her.

In that moment, my eyes were open to the benefit of this present suffering on eternity. God uses Jonathan to bring people to Jesus. Even in the midst of sad news, God reminded me how he could use this to touch many people. If one person comes to Christ it will all be worth it.

Thursday, April 09, 2009

What an unexpected chain of events today has held! The moment the oncologist walked in the door and motioned for me to come out with him in the hallway, I knew what he was going to say. I think we all are slightly in shock. After all, we had a completely stable scan just 3 weeks ago. This tumor is not supposed to grow fast...but it is.

So in just a matter of moments, our whole world has changed once again.

Once Jon is stable they will be moving him out of ICU to the oncology floor. His oncologist will take over his care. Once he feels he is stable enough, we will begin his chemotherapy. Even if he is not stable, we will begin no later than Monday. The hope is that his white counts will remain stable enough to be able to still have his sinus surgery on the 20th. We have to be able to treat both things or we will keep crashing.

For now we are going to do an oral chemotherapy. It will be 4 days of intense therapy that I can give him at home. Then we will be off until day 28 then start the 4 days again. This will repeat for 8 cycles. If the tumor responds we will continue with this treatment. If it doesn't we are looking at possibly doing a biopsy and radiation. At this moment I am not open for any type of brain surgery. Radiation is a possible treatment but we want to wait and try all other options first so we can protect his brain.

I will keep updating this blog and facebook as often as I can. Thank you all for you love, prayers and support. You are all so appreciated.

Wednesday, April 08, 2009

It takes a lot to freak me out. I am officially starting to freak. Something is wrong. I know it in my heart. I know something is not right. I just don't know what. I feel like Jon's brain is crashing. I am having a hard time getting this across. His nurse is wonderful and is listening. But I am feeling helpless.

Pray for wisdom. For the doctors. For me. Pray for me to be assertive and fight for answers. Pray I will know what to fight for.

This is scary. This is when I feel the most frustrated. And when I get angry. And when I desperately need to feel the arms of Jesus around us. Because I don't understand.

Back in Tennessee, our precious friend Sydney is fighting her battle with cancer and has just undergone a painful surgery. I don't understand. I hate that these kids have to face this pain and fear. I don't get it.

The only thing I do get is that it breaks the heart of my God as well. It was not meant to be this way. While I don't understand why he allows this in their lives when he could take it away, I understand one thing...if there was a better way he would. I have to believe that God in his sovereignty knows what he is doing and that it is done out of an incredible love that supersedes our understanding.

Please keep praying for Jon and for Sydney.
I finally gave in. After watching Jonathan over the past few days, I called the doctor to ask what the protocol was for hypothermia. Jon has had an average temp of 90 to 91 degrees for the past three days. His speech has been slurred. He is confused and disoriented. He generally is not feeling well. He has a nasty sinus infection and junk in his lungs. This morning when he woke up his arms and hands were a purple/gray color and ice cold.

So today on my way to Woodland Park to visit a friend, I thought I would just call the dr and ask. They tried to return my call twice but couldn't get through due to bad reception in the mountains. So my husband got this phone call telling him I needed to take Jon to the ER. I tried really hard not to take him. I called 2 other drs. I tried to reason with them. But it didn't work.

So here we are. I must say that I am glad we came. Its not that I didn't trust the drs. Or that I didn't really believe he needed to come. Honestly, I was afraid. My mind did a flash back to the only other time I have ever been to the emergency room at this hospital. It was one of the days that we realized that something was terribly wrong with him just days before we got the brain tumor diagnosis. It was a paralyzing memory. Walking into what felt like an inner city, run down ER lobby where everything was covered with bullet proof glass and security. The wait was going to be hours long. And true to his form, Jonathan was miraculously better the minute we walked in. It didn't take long before we walked out- Left without Being Seen stamped across our paper work. I was definitely not going to be seen. We were going home to Tennessee- whatever was wrong he would be ok until we got there.

The last thing I wanted to do was relive that experience alone. Thank God I swallowed my fear and allowed Him to be my courage. I have been pleasantly surprised. This hospital recently joined with the Children's Hospital in Denver. So they now have a pediatric ER. We were seen immediately. Every one of the doctors and nurses were incredible. It is good to know that there is a good place minutes from our house to go should things like this arise. The doctor took Jonathan's situation very seriously and has admitted him to ICU. Its nice to know I am not crazy. Its nice to know that they are in charge now!

So I am not sure what they area actually calling this episode. In mommy language, Jonathan got very sick while we were in Tennessee. He is not recovering very well. His brain is kind of crashing on us. Right now they are trying to treat the sinus infection and chest infection with IV antibiotics. They are giving him IV hydrocortisone to help his body recover. We are dumping fluid into him...he is quite dehydrated. He has a warming blanket under him to keep his temp above 95. He has oxygen going since he keeps forgetting to breathe when he sleeps. His eyes keep twitching and shaking...that kind of bothers me...especially since his body is warm now. I am not sure what is going on. He is still quite confused. And he is not really acting like Jonathan.

But it will be ok. We have a big God. We have great, aggressive doctors taking care of him. We have an incredible team of doctors who never cease to amaze me. We have a wonderful family who make all of this easier. Thank you all for your continued prayers.

Monday, April 06, 2009

Please pray for Sydney. She is Jonathan's friend from clinic in Tennessee. Sydney is fighting an awful disease. She has recently begun to show signs of new disease. My heart is breaking for her and her family. Pray for a miracle. God is the only one who can rescue her.

Joshua. My precious child. Life has been difficult for him. In the midst of the challenges, he brings so much joy and life to our family. He is non stop life....always moving, exploring, creating, laughing. I love this child.

I think he got a little stressed out during our trip to Tennessee. Its so hard to always be good. Its been hard to settle back down into our normal routine.

Yesterday, though, this precious child blew us away with his simple child like faith. Every morning since we have been home he has started the morning very early and very loud, resulting in very annoyed parents. Yesterday was very different. It was very quiet. Joshua didn't come in the bedroom until he heard us awake. Then he announced, " Last night when I went to bed I prayed for Jesus to take away the bad words and the bad behavior."

Melt my heart. I was so humbled. And so proud. The entire day he was a different child. Calm. Pleasant. A joy to be around. The old Josh. And how he beamed when we told him how good he was being. And when we told others he was sure to point out that he asked Jesus to take away the bad and He did!

Saturday, April 04, 2009

We spent lots of time with our cousins at Granny's house. The kids enjoyed playing together again.
They even made a time capsule and buried in the yard. These are the pictures of the things they chose to put in the capsule.

Jonathan got very sick during our trip. He should have gone to the ER but we just kept watching him, hydrating him, and giving him meds. Turns out that on top of everything else he has developed some sort of asthmatic reaction to Tennessee. He enjoyed seeing everyone but unfortunately was so sick that his visiting was not very lively! He spent most of the week asleep, even while sitting up.

Brittney and her friends had several special times together while we were in Knoxville. Honestly, it was the hardest to watch Brittney spend time with these special friends. There just was not enough time during the trip for her to be with them as much as she wanted. I am so thankful for these girls and the part they play in Britt's life. I pray that her life will always be full of these kinds of special lifelong friendships.