Friday, September 25, 2009

As this week has now become even more complicated, I find myself running to the only safe place that I can run to...the arms of Jesus. This afternoon I am encouraged by the words in a tiny book by perhaps my most favorite person in the entire world- Amy Carmichael. In her book: His Thoughts Said...His Father Said..." there are many encouraging thoughts. But this one really encouraged me.

There is a Place By Me

His thoughts said, " Before me continually is the grief of wounds, confusion, suspense, distress"

His Father said, " Behold there is a place by Me, and thou shalt stand upon a rock. Then, as a frightened child on a storm swept mountain side would gratefully take his father's hand, and stand on a rock in a place by him, fearing no evil- so it was with the son. For he knew that though the earth be removed and the waters be carried into the midst of the sea, that rock by his father will never be moved.And he remember words about things that can be shaken and things that will remain. And though no small tempest lay on him, he said to the multitude of thought whose voices sought to disturb him, Sirs, be of good cheer; for I believe God that it shall be even as it was told me. For as his majesty is, so also is his mercy.
If you would like to send Jonathan a note to cheer him up, you can go onto the hospital website at and under the "about your visit" site. There is a place to send email cards that are delivered to his room.

Thursday, September 24, 2009

Well, it appears that our stay here at the beautiful Children's Hospital is coming to an end. Hopefully, we will be headed home tomorrow morning. Jon has an EKG scheduled in the morning. Evidently cardiac issues are common in some of the genetic things that are going on so we are going to make sure that is all working right.

I still really don't know what they have tested for or are looking for. I know they have a long list and it appears they are going down it ruling thing out. There is a good chance that all of this is nothing more than toxicity to the chemotherapy but we need to know if it is anything more than that. Also need to know if there are conditions that are making it more likely for him to be toxic to the chemotherapy.

My prayer is that they will quickly figure it out so we can resume chemo soon. I don't like going to long without knowing we are fighting that stupid tumor. Thank you all for your continued prayers and support. We love you and appreciate you!

Monday, September 21, 2009

I have so much to blog about but don't have time right now. I have a feeling the next few days will provide ample time to get caught up. I wanted to let you all know that Jonathan will be admitted to the hospital tomorrow morning for some extensive observation and testing. We need to find out what is going on with him. If this is the new normal, I can deal with that as long as they tell me that is what it is. But until we know that for sure I am not content to just sit back and watch whatever is happening happen.

Basically he has been up and down since we were last in the hospital 4 weeks ago. There is no explanation for all the changes that are going on. Finally on Friday the doctor decided we were going to figure it out. So we are to stay in the hospital until we have it figured out.

Mya and I will be joining Jon in the hospital adventure. Shawn is staying here with the other three. I am hopeful we won't be there too long. So I am off now to get ready. Thank you for praying for, supporting, and loving our family through this journey. We love you all.

Thursday, September 10, 2009

What a crazy, long day! The oncologist decided yesterday that he wanted Jon to be seen by the seizure specialist today in clinic. So they ordered another sleep deprived EEG for this morning and then we went to see the dr. The EEG was the same as the one last week...definitely could be prone to seizures but not seeing much actual seizure activity. Duh!!!! thus the reason we asked it to be done when he was in the hospital and it was happening! But we are just the parents; what do we know????

The neurologist did have some interesting ideas though. She picked up on some new muscle weakness that is somewhat concerning. Both eye lids are drooping today which is different and odd. There is some kind of muscle condition or disease that can cause some of the symptoms we see but not all of them. She did blood work to test for this. It takes about a week before the results come back. She also decided that they wanted another 24 hour EEG. They had an opening today...lucky me! I should have told them no and to wait until next week but I didn't. And so now it has added so much stress and chaos to the weekend.

I am going on a women's retreat tomorrow with ladies from church. Jon has to be taken all the way to Denver just to have the EEG disconneted. Two hours out of the day. Two hours out of a day that didn't have 2 extra hours in it. I think any other time it would be no big deal. But this time it is jut particularly annoying because they are doing it after the fact and will not really see anything... so its kind of a waste of time and money. But I want these doctors to be diligent in finding answers so I am willing to do what they ask at least for now.

The prep for this EEG took forever...long enough to watch an entire movie. So we got on the road late and ended up in rush hour traffic. Jon started throwing up in the middle of this traffic. I couldn't reach a bowl so he was throwing up in diapers. Finally we got out of traffic and I could stop for a little while and get the bowl. He threw up over 17 times...those are the only ones I was able to write down. I have no idea what happened. When we got home, I gave him anti-nausea meds and he went right to sleep. Thankfully he has not thrown up again.

So here we are tonight. I am praying against the attack of the enemy...there is much of this going on in many of the lives of those going on the retreat. God is going to be working in our hearts there and the enemy is not to happy about it. I am praying for wisdom. I am praying for the ability to clearly and confidently express my thoughts and frustrations in a calm and respectful way. And I am praying for the doctors involved to have wisdom to think out of the box and find some answers to wait is ailing Jonathan. Thank you all for your prayers as well. We love you all!

Wednesday, September 02, 2009

Thank you friends for praying me through the night. I woke up this morning and found this devotional in my inbox...I thought it was rather timely considering my prayer from yesterday. This is from the Streams in the Desert.

Author: Mrs. Charles E. Cowman
Source: Streams in the Desert
Scripture Reference: Philippians 1:29

Fashioned In The Fire

"Unto you it is given . . .to suffer" (Phil. 1:29).

God keeps a costly school. Many of its lessons are spelled out through tears. Richard Baxter said, "O God, I thank Thee for a bodily discipline of eight and fifty years"; and he is not the only man who has turned a trouble into triumph.

This school of our Heavenly Father will soon close for us; the term time is shortening every day. Let us not shrink from a hard lesson or wince under any rod of chastisement. The richer will be the crown, and the sweeter will be Heaven, if we endure cheerfully to the end and graduate in glory.--Theodore L. Cuyler

The finest china in the world is burned at least three times, some of it more than three times. Dresden china is always burned three times. Why does it go through that intense fire? Once ought to be enough; twice ought to be enough. No, three times are necessary to burn that china so that the gold and the crimson are brought out more beautiful and then fastened there to stay.

We are fashioned after the same principle in human life. Our trials are burned into us once, twice, thrice; and by God's grace these beautiful colors are there and they are there to stay forever.--Cortland Myers

Earth's fairest flowers grow not on sunny plain,
But where some vast upheaval rent in twain The smiling land . . . .
After the whirlwinds devastating blast,
After the molten fire and ashen pall,
God's still small voice breathes healing over all.
From riven rocks and fern-clad chasms deep,
Flow living waters as from hearts that weep,
There in the afterglow soft dews distill
And angels tend God's plants when night falls still,
And the Beloved passing by that way
Will gather lilies at the break of day.

This classic devotional is the unabridged edition of Streams in the Desert. This first edition was published in 1925 and the wording is preserved as originally written. Connotations of words may have changed over the years and are not meant to be offensive.

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Tuesday, September 01, 2009

Hurting. That's where I am tonight. Friends, I need your prayers. I asked the Lord to rescue me from my fears and I am beginning to think that its going to get worse before it gets better. I know he is growing me and stretching me. I know he has to cut out all the scar tissue that has grown in my heart. And that means a lot of bleeding. Alot of healing. And just time.

The fire feels as though it has been turned up full blast. I need courage to stay in the fire until the work is done. I know the Lord is not holding me there against my will. I know this is the answer to my prayer. But honestly, does it have to be wave upon wave of encounters with the things that scare me the most. Or the things that hurt the most. Why does everything have to be all at once?

I will tell you that this really has nothing to do with Jonathan although the past few days of dealing with him has contributed. So please don't worry..the Lord is just refining me. I am trusting that he has the ability to hold me as he breaks me and molds me into his image. It will all be ok when its done.

Thank you for your prayers my special friends.