Wednesday, August 17, 2011

Smiling Again



 We have had some pretty rough days in the last week. It just seemed like one dilemma after another. Then, two days ago, it just seemed like we turned a corner. They identified what they thought is the cause of the fever and started treating it. His fever began to drop and his spirits began to lift.
Josh needs to walk to clear his lungs of things that might be causing the infection. Last night he was pretty week but agreed to walk. We went up to the observation deck of the building. The sun was setting and there was a patient playing the piano that is up on that floor. His mom was singing while his dad photographed the two of them. She sang beautifully and the sweet melody wafted through the air. It was surreal. It was almost as if we were simply out for a stroll. The only blatant reminder that there was something amiss was his mask and the IV poll,  that has become Josh's constant companion.
We are still unsure as to what reason our Lord has for us not being able to return home yet, but we know He has one.

Dear Lord, help us to walk in a daily dependence on you. Thank you for some good days. Thank you for our dear friends and family that continue to walk this journey with us.

Saturday, August 13, 2011

The Battle



We have had some very hard days. We had hoped to be home by now. Clearly the Lord has a reason for us to still be here. We are just unsure what that is. We are grateful that we were still here when Josh's fever spiked. It would have been scary to try and fight it while we were on the road.

We know the fever is actually not to be feared. It is the outward sign of an inward battle. It is his body's way of fighting something that should not be there. There is a struggle within his body between good and bad cells.

Pastor Rodney told a story one day about a boy talking with his grandfather. The boy talked about how hard it was to make good choices. The grandfather told the boy that it is as if there is a fight between two large dogs within each of us. A good dog and a bad dog. The little boy asked his grandfather which dog would win the fight. The grandfather said, "The one you feed the most".

Cancer has become a symbol of so many things to us. The Doctors used chemo to wipe out the bad cells, sadly they had to kill good cells as well. We must try and get enough nutrients in Josh to feed the good cells but the bad cells are aggressive.

Dear Lord, help us not to fear the fever but to pray for the battle that rages within Josh's body. Help us also to recognize outward signs of the battle that rages within us all. Please help us not fight the process, knowing that you are a loving Father and will allow what is necessary to eliminate any cancer that might lie within us, so that we might carry out your plan for us.

Thursday, August 11, 2011

Seeing Christ in the Hard Stuff

Just when we think we have made it through the worst of this cancer thing, something new comes along. Yesterday, Joshua lost the bulk of his hair. At first, it was just a few irritating strands. They bugged him when they fell in his face. Then it began to come out in clumps when he ran his fingers through his hair.

Hair, in the scheme of things, might seem insignificant. But yesterday, his hair loss, seemed like another crushing blow. As parents, it was devastating to see. We felt helpless as a part of him slipped away. Again, the feelings of overwhelming grief and anger swept over us all. Another loss.

The only thing we could cling to was that our Lord knows the number of hairs on our head, and they could not fall with out His permission. Josh got to keep his hair a week longer than he should have. The doctors and nurses expected it to fall out much sooner than it did. As hard as it was to watch it fall out yesterday, it would have been much, much harder the week before.

We have heard that his hair will probably come back looking different than before he lost it. Oddly enough, last night as I was sitting on his bed, grieving the loss of his hair with him, the Lord reminded me of the Israelites. (I know weird right) As they were headed to the promise land, and they safely crossed a river or some other obstacle, they would build a pile of rocks. The rocks would be a reminder of what the Lord helped them overcome.

Lord, as Josh's hair grows back, please let it be a reminder of what You allowed him to overcome.

Wednesday, August 10, 2011

Waiting......






We know the Lord has perfect timing...and that He knows exactly when Josh's body is going to start producing the good cells they need to be producing...we know all of that. It is just that the waiting is a little frustrating.

Last night they needed to move Josh to a different room. He was on the pediatric floor and they needed his room for younger children coming in. We totally understood that, it was just hard to pack up his room and not be headed home.

His nurses, on the 10th floor, all loved him and he loved them. They showed him great kindness and compassion. Many of them spent much time in his room just joking and laughing with him.

One sweet nurse, who was from India, came in and shared with Josh that she knew God had a great plan for him. She told him that man's medicine was good but it would be Jesus Christ that healed him. She was not even supposed to be working on our side of the hospital that day but felt led to take time out of her day...away from her other patients, to tell him that.

Another sweet nurse came in to take a picture with Josh and tell him that he was her favorite patient. She kept hugging him and telling him that she was so happy to have him as a patient.


We are sad to move to a new floor and leave them behind. One thing we do know is that there is something about Josh that draws people to him. He will make new friends on the 12th floor as well.

Lord, we know You have us still here for a reason. Please help us to learn what You want us to learn and do what You want us to do. Thank You Dear Father for covering us. Thank you for the body of Christ that lifts us up daily. Thank You that You are in control of ALL things including the room Josh is in. Please help us to reflect You on the 12th floor of MD Anderson.

P.S. There is an upside to waiting..we did get the, "Get Well", banner, that our Pal Kristy started, done...finally.


Sunday, August 7, 2011

Missing Sarah




We have heard that cancer does not just effect one family member but the whole family unit is effected. We have found that to be very true. Not only has our immediate family been empacted by Josh's illness, but so has our extended family, our friends and our community. We are grateful to have many, many people walk this journey with us. Many people have altered their lives to support and pray for us.

Our Sweet Sarah is no exception. She has given up many things as she has walked this journey with us. She has never complained.

One of the things we had planned for this summer, was a trip to the East Coast to spend time with "The East Coast Walton Family". We do not see them nearly as often as we like, but we have a fantastic time when we do manage to get together. This was the summer we had planned to do just that.

Well, as those plans changed, we cancelled travel plans for all of us but Sarah. She had been looking forward to this trip with great anticipation. Thanks to Brian's family she was still able to go.
Sarah and her cousin Kimmy
We miss her terribly, but know that she is being well loved and taken care of by our family. We are sad that she is not with us, but so excited that she is having a wonderful time. Thank you East Coast Walton Family for making this trip possible for her.

The East Coast Waltons....and Sarah


Friday, August 5, 2011

Universal Language


Here at MD Anderson and the Ronald Mc Donald House, we have found of melting pot of many different nationalities and languages. We hear, all around us, giggles and laughter of little ones who speak words we do not understand. We simply know there is joy attached to the words.

There is also something else we hear from the parents of these little ones. It is grief. It sounds the same, no matter where you are from. Yesterday, I stood in the laundry room with a young mom, who in her beautiful broken English, told me about her eight year old son. His cancer had returned once again to ravage his little body. She searched for the right words in English to tell me that she could not find the words to tell her little boy the doctors had given up on him. There was nothing else they could do for him. The doctors told her and her husband, to take the limited time he had left, and try and find something fun to do with him and their daughter.

As I struggled to understand the individual words she was saying, I already knew what she was telling me. She turned and tried to hide her tears, only to find that mine had already begun. She did not need the correct words to say, I could see what she was saying in her eyes. I have seen that look countless times since I have been here. Its a look of recounting words about someone you love dearly, and hardly believing they are true, even after saying them so many times.

I had no wise words for this young mom, only tears. She let me hug her and we cried together.
Grief has a universal language...but so does caring and understanding.

My Devotional for today was on 2 Cor. 1:3-4 "Blessed be the God and Father of our Lord Jesus Christ... who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God".

Dear Heavenly Father, I do not presume to know Your plan, but I know You have one. I plead with You Lord, for this little boy and his family, they need a miracle.
Lord we have been comforted by You and by those who love us. Please help us to comfort those who are in need around us.

Thankful


Give thanks to the Lord, for He is good, His mercies endure forever......

Thank you Lord....

That Josh still greats me everyday with his same boyish grin and that his treatments have gone so well.

That Sarah made it safely to Philadelphia and is being loved on by our East Coast Family

That Brian has been an amazing husband and father and has safely guided our family through this new terror in our lives.

That our older boys and their families have daily lifted us in prayer and have encouraged us all along the way. Thank you that they and their families remain healthy.

For dear family and friends that have walked this path with us and remind us daily of their support.

For local families that have become sweet friends and also continue to support us almost daily with delicious meals.

For today...because tomorrow holds no guarantee.

That I have managed to make it several days without further damaging my car in the parking garage...

Last but not least, thank you, Gracious Father for loving us with an everlasting love. Thank you that your mercies are new every morning!

Wednesday, August 3, 2011

And My God Shall Supply All Our Needs according to His Riches and Glory

Josh and his Picc line

I am sitting downstairs of the RM House...waiting to drive Brian to the hospital. Today he will take a class to learn how to change the dressing on Josh's Picc line. We have to be cleared to do that in order to get Josh home.
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Getting his Picc line dressing changed

I as I wait, I went through my new, usual routine, I make my vitamin juice (gross) and toast to help the juice go down. I am not in my own kitchen so I am now relying on the generosity of others, even as I a make something as simple as toast. As I go to butter my toast, and go looking for a knife.... I am pleased to find that someone.. the night before.. had replenished the empty knife drawer. Now, I am not sure who the knife fairy is..but I am grateful. This may seem like a small thing, but today, it is comforting to me.

I know there are many, much larger, more important challenges, ahead, like keeping Josh's Picc line incision clean, but for today.... I am grateful for a knife.

Dear Father, thank you for supplying our daily needs. Thank You for knowing what our future holds.

Tuesday, August 2, 2011

Perspective and Other Rambling Thoughts


This is the third Tuesday we have spent in a hospital. The third week away from home. In some ways, it seems like time has sped by quickly, in a flurry marked off by a stream of conversations with Doctors, and nurses and changes in chemo bags. In another way it seems like we have been here for a lifetime.

By day, we become a part of a sub-culture that we call MDA-10th floor. We have learned the doctors routines, the nurses shifts and where the ice machine is. The smells, sights and sounds have become very familiar to us.

By night, Sarah and I come back to our temporary home, the Ronald Mc Donald house. Here we have become a part of another sub-culture that consists of the families will little ones with an illness. At first, I fought the acclamation process here. Seeing these families made Josh's illness too real. I was not ready to become a part of a culture that included conversations between moms and dads who were trying to plan out schedules between Dr.'s appointments... Who would stay home with the other kids and who would travel back to Houston for little one's next Dr.'s visit....it was all too overwhelming to me.

When we first arrived here, I was so devistated by what Josh was facing, I did not even want to see what others around me might be walking through as well. As time went by, and I began to breathe a little bit, the faces around me began to come into focus. I began to meet moms who had already traveled the journey we have just begun. They have shown Sarah and I great kindness. In them we see hope. In them, we gain perspective.

There are little ones here who wear their lack of hair proudly. They run and play with the other little ones. A sweet mom told me that her daughter, Sirah, who is 8 had already had a tumor removed from her brain several years ago. She had to re-learn everything. Now, once again, they feared she had another tumor. She told me that Sirah was undaunted by the thought of another surgery and re-learning everything...again. They had brought her back to MD Anderson to see if the tumor was rapidly growing, if it was, another surgery would be necessary. If not they would be able to go home and wait out the tumor. They got to go home yesterday.

Dear Lord, until this time, we have never know the terror of a sever illnes striking one of our children. There are many, many families who struggle through hospital stays, waiting games and crying out to You in the darkness of the night. Lord, forgive me for not looking and not seeing. Please Lord, heal these little ones, allow them to be a testimony to Your magesty. Help me to have eyes to see beyond the smiles of families that are walking this path. Help us to extend the love that has been extended to us.