Sunday, August 14, 2011

A Hope and A Future

If you are interested in keeping up with my son Ryan's battle with Hodgkin's Lymphoma, then please check out and follow my new blog...
A Hope and A Future

Friday, August 12, 2011

Not Exactly What I Wanted to Hear

Hodgkins Lymphoma.

I knew the diagnosis before the Dr. told us. A quick google search on "lymphoma in kids"  was enough to take me to a list of symptoms that fit perfectly, especially with the description of the "hard rubber like ball" the surgeon told us he'd removed during the biopsy of Ryan's lump.

It's rare. It's especially rare in kids under 15. What is even more rare is how fast the process of detection to diagnosis has been. These things sometimes take months to get diagnosed. I first noticed this lump a little more than a week ago. Our pediatrican was awesome as has the staff here at Loma Linda been- save for one PET Scan technician. (I'll save that story for another time.) The speed has also been frightening. It begs the question, why the speed unless this is really serious. We knew almost from the get -go that it was.

This will be my last blog post about this on this blog. I will continue the story in a new blog though and you'll be able to find a permanent link to it here and occasional mentions when there is an update. This is a kids art blog after all, and something I think I am going to need to keep me sane.

For now I'll let you in on the prognosis and the plan. The prognosis is amazingly good. As bad-horrible as this all is, it is the best case scenario of bad-horrible. They think they have caught it really early. Stage 1 or Stage 2 at the latest. They will be doing a few more tests to confirm this like a bone marrow biopsy and CT scans of his abdomen and pelvis, but they are fairly confident these will be clear. It just has to be done to make sure. This early staging means the treatment will be at least complicated as it can be.

Of course chemo comes next. He will be getting a PICC line inserted in his arm at the same time he gets the bone marrow biopsy sometime today. This will allow them to give him the medication and take blood without constantly doing new IV lines and poking him all the time. The downside is when he goes home, he won't be able to swim, rough house or do a lot of the things his friends do. The end of the line will be very near his heart and vigorous activities could cause the line to slip and to damage his heart. The upside is that he won't have to carry in groceries for me for a while.

He will lose his hair. It won't be too big a deal. He wears his hair pretty short anyway. My husband plans to shave his head too and my older son probably will too.

The long term of course is that he will always carry this. He will always be looking over his shoulder to see if it will come back. There will be questions and scans the rest of his life. For now though we will take care of today. Tomorrow has enough trouble of it's own. I also want to promise you something... God will make something good of this, just you wait and see!

Thursday, August 11, 2011

The Land of Uncertainty- Part 2

I think the hardest part of being here has been seeing all these other precious children. Some are bald, some are not. Some are tall and some are no bigger than my own little one who hugs me at my knee.
My heart goes out to them and their parents, and I wonder if we are heading down the same path they are on.

Every fiber of being is screaming, "NOT MY KID"!

I could fight, argue, and scream at God for letting Him allow this to happen. Of course, for right now, we still don't know what "this" is.  We are waiting for biopsy results and we are waiting for a PET scan today. We are waiting to hear if and when we'll get to go home. Waiting, waiting, trying not to go insane.

Instead for now, I am trying to accept this circumstance as a blessing, a gift, an opportunity for something bigger that God has in store for us. There is joy here for the taking. Somewere deep within. We may have to dig deep to find it, but I know it will be there.

I am thankful for the opportunity to meet these wonderful kids. To get to pray for them specificially. To personalize the ugly truths that so many parents deal with every day and our own life's circumstances allow us to move to the back of our minds- not out of cruelty or even indifference, but just because unless you have to deal with it every day you don't want to.

They have a school here in the hospital. For most kids, I would suppose it helps create a sense of normalcy. For my homeschooled kid, a novelty I hope will be a distraction.

Wednesday, August 10, 2011

The Land of Uncertainty

Here we sit waiting to be taken in to see our son who has just come out of surgery- a biopsy procedure of the lump we found near his collarbone eight days ago.

Let me back track just a bit... yesterday we were waiting for results of CT scans, when our pediatrician asked us to come in. The scans showed suspicious signs of lymphoma. We were instructed to take our son to the ER at the world renowned hospital in Loma Linda. They had already called ahead and the plan was for him to be admitted and the pediatric oncology team at the hospital would be taking over his care.

We still don't know much more than we did yesterday. There is no confirmation or denial. Just suspicion. Just uncertainty. Just faith. Just hope. Just trust that God we will carry us through this too. He has already brought us through so much. It is so easy to become like the Israelites and forget all He has already done for us. Thankfully the memeories are fresh and clear and undeniable. Thank you for praying with us.

Tuesday, August 9, 2011

Life Goes On and the Paint Layers Keep Getting Laid On...Part 2

Yesterday, I left the story in a place of uncertainty. It's never a fun place to be, yet it's the place where we can gleen the most opportunities to deepen our relationship with God and our faith and trust in Him. We have been in these types of places a lot as of late. I will explain more about what that means in a bit. Back to the story...
We were safe at my mother-in-laws house and for all intents and purposes, comfortable enough. Having lived there as a family before for five years though, we knew that we just could not stay there again. We would if we had to, but we were praying for an alternative. Unfortunately our blessing came through the misfortune and ensuing benevolance of someone else. It seems wrong that someone should benefit at the expense of someone else, but it's really all about perspective. God took something that looked awful, and really turned it into something wonderful. Wouldn't it be wonderful if all our misfortunes could turn into a blessing for someone else who is truly in need of one? Somehow it might make them seem less unfortunate.
A wonderful couple at our church did just that, they chose to turn their misfortune into a blessing for our family. In the midst of very hard times, financial and physical, these lovely people were facing a foreclosure on their home. They chose to try and complete a short sale. After already finding a new housing situation, they felt some trepidation at leaving the property vacant. Everyday you hear of empty homes being pilfered and stripped while they are waiting to be sold. Voila, an amazing opportunity was created! We needed cheap temporary housing and they needed a housesitter. The temporary diggs even had a pool- green swamp though it was. No worries, my husband is a professional pool cleaner. Call it coincidence if you'd like, but I know where the plan originated. Pretty awesome, uh? Keep reading, it gets better.
Even though, this was an amazing answer to prayer, it was still temporary. This situation was only going to last 2-3 months at most. There we were, right back in the land of uncertainty. Again, not a problem for God.
We had pretty much resigned ourselves to the idea that we would need to downsize in a MAJOR way and live in a two bedroom apartment for a while. We have 3 kids at home right now. Two boys and our toddler girl. This would be tough, but we were willing to do what ever we had to. (But we wouldn't have to!)
We heard through the grapevine that a family my husband had known for years(he went to high school with their daughter) had a house for rent. The funny thing was that I was pretty sure that was the house our homeschool charter school facillitator was living in. Right around the same time as the fire though, I had gotten a call letting me know she wouldn't be working with us any more. I was so bummed. She was another friend my husband had known forever and I had known since marrying him 14 years ago. I still don't know all the circumstances relating to it, and I am still bummed to not be able to work with her this year, but because she chose to leave the house, we are able to rent it. I hope she'll be blessed by that. This house is actaully bigger than our last one and $400 less a month! The owners are also very encouraging of us making it our own. I will finally get to create a room for my little girl! The boys will also be getting some paint that isn't white as well! We will be moving in at the end of this month- just in time for the homeschool year.
On a side note, I mentioned I would let everyone know the true cause of the fire as well. It was...
The fire investigator deduced that the fire had started at the outlet behind my sons's bed. The combination of the plugged in fan and the friction of the bed moving from getting in and out of it, had created a hot spot waiting to ignite. It could have happened at any time. Why it happened in the five minutes my son was out of his bed in the middle of the night is part of a bigger plan I'm thinking.
What is was not caused by was any misbehavior on the part of my children. I do urge you though to be careful of what you put in front of utilized outlets- any kink in the cord can create a fire hazard.

I wish I could say we have left the land of uncertainty for a while... we never truly leave anyway, each breath we breath is not certain, it is a gift. We are still firmly entrenced at the moment though.
Because of getting to stay in this house, we got to use the pool. An amazing blessing when you live somewhere with average summer temps over 110 degrees. Because of using the pool, I noticed my son taking off his shirt after a swimming session with friends. He is a very private kid at 9 years old so I rarely see him shirtless. This day, I noticed how thick his neck and shoulders seemed to be getting. Wow, all the swimming must be turning him into Micheal Phelps! Wait, all that thickness is only on the left side...
Ryan has a very large swollen lymph node. X-rays revealed a few more under the skin not visible to the eye yet. Blood work showed a slightly elevated white count and markers for inflammation. A CT was ordered to get a better look. This post is late today, because that is where we spent our afternoon. We left there around 1:30 after being told that results would be at our doctor's office in a couple of hours. At 2:30 I got a phone asking for Ryan to come back in for a recheck at 4:30. If the results weren't in at the time of the phone call, they should be by the time we get there. Welcome to the land of uncertainty- the place only God can get us through.

Monday, August 8, 2011

Life Goes On and the Paint Layers Keep Getting Laid On...Part 1

I have always imagined the whole of history(past and future) as an enormous multi-dimensional tapestry, puzzle, or for the sake of making my metaphoric title work; a painting. The trick is that there is only one who can see the whole painting at one time. If we work very hard, we can see behind us pretty well, though our view is limited to our own memories and the opinions of others in regards to memories of events and facts. This is the visualization I carry with me in regards to my favorite bible verse of all time, the one that gets me through everything; Romans 8:28

And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose.

I quote that verse a lot.
Some use it as a sort of a cop out, but not me. I truly believe that God can take all of our trash and pain and turn it into something ultimately beautiful. The evidence I put before you is the rearview perspective of my life, especially in recent weeks. Yes, for those of you who might have been wondering is an update on what has been going on since our Father's Day Fire...

There were quite a lot of things that happened that we thought would happen, though perhaps not exactly as they happened. For instance, we knew our landlord would not be pleased with the news of the fire and the damages to the property. What we weren't expecting however was that he would accuse of trashing the house and accuse our children of mischievous arson. He actually told us he believed our children had caused the fire. He then proceeded to give us thirty days notice on our rental agreement, though he wanted us to get all of our belongings out of the house within 3 days so that reconstruction could begin immediately.
After consulting with an attorney and speaking with our landlord again, we were allowed a more reasonable time frame to move our salvageable possessions. The process wasn't easy though. We did not have renter's insurance- we will from now on I promise you! So we had to try to salvage what we could in spite of smoke damage. To add insult to injury, the house had no power and we live in the desert, and it was the middle of the summer. The kids all immediately got sick with summer colds and could not be farmed out to friends houses while I worked and could not be with me in the house under such conditions. God is good though. Grandma was able to keep them with her at work- though she did not get much work done with my very demanding toddler around. I however did get work done in the house, cleaning every item before packing it. I kept my shirt wet with cool water and hydrated my body with the same. I was out of the sun, so it wasn't that bad- though if I could have had A/C I would have gladly taken it. After a week or so, the kids were all better and had a grand ole time at their friends houses while I delt with our stuff. It was amzing how much we ended up getting rid of. What was more amazing was how much we still had! I made my husband promise me that we will never, ever, again have so much stuff!

So once our stuff was taken care of, the question became where were we going to put our remaining stuff and ourselves for that matter? Our neighbors kindly hosted us for a couple of days. Just long enough for my brother and sister-in-law to leave my mother-in-laws house. They had been visiting at the time of the fire. We knew we would be welcome there as long as we needed, but it was pretty out of the way for us and the gas prices were going to cost us more than rent had.  What we didn't know was that there was already a place for us... which I will talk about in my next post.
 In which we will discuss our current and future living situation, as well as the true cause of the fire.