Quick update from yesterday....

Dear Family and Friends,

Quick update from yesterday....

We did not have surgery this morning...it is now scheduled for Tuesday morning at 7:00-7:30 am. The plan is to do a permanent shunt so the excess fluids have a place to go in the event fluid build up happens again. Per the doctor, after surgery, he should regain use of all things lost since Friday morning. This should be 45 minute operation. We will spend the night in PICU for observation, then transferred to OICU..then to the regular floor? So not certain how long we will be here....depends on recovery.

Appreciate your prayers,

The Days

Urgent prayer Request

Dear Family and Friends,

Cody is being moved to OICU as I write this. The plan is to do surgery tomorrow morning first thing to look at his brain and possibly put in a shunt to drain the fluid to relieve the pressure. Dr. Muhonen will be doing the surgery. Please pray for wisdom and guidance for the doctor as he works on our precious boy. Please pray for full recovery.

In His Hands,

The Days

4 Steps Forward, 2 Back

Dear Family and Friends,

Darn...we are not home. The roller coaster ride continues. 4 steps forward, 2 back. Cody developed a fever and headaches Wednesday and they have continued since. We have taken a CAT scan of his brain Thursday which showed what appears to be fluid build up on his brain. Today he had an MRI on his brain and spine to get a closer look as to the possible cause.

They are saying that some portions of a couple of vessels his brain appear to be enflamed a bit which may cause brain fluid to block, hence the headaches. The purpose of the MRI was to rule out any new tumors. In fact, they are at bay; there are no new ones and they appear to be, at worst case, the same size, best case a bit smaller than the MRI of a couple of weeks ago. So very grateful for that. We are waiting to have the neurosurgeon have a look at the MRI to get his opinion..which may not happen until Monday. There is some talk of maybe putting in a shunt to help drain the fluid to relieve the pressure. Part of the set backs could be from weaning off so many medications at the same time. ????

Another bit of good news is his white counts are up and total ANC level (a calculation of many things) are up too. Platelets are struggling a bit, but overall things are looking up in that department.

The two steps back is that now that he is off steroids, his appetite has waned quite a bit, his pain is back so had to pump back up his continuous pain medication and he wants to sleep all of the time and this unknown headache thing. We have made some progress with physical and occupational therapy. But, since his pain is back, it is difficult for him to do physical therapy.

Cody continues to have a good sense of humor, when he is awake. Which is a great gift. A small example: Cody's face was all puffy from the steroids..Dave was trying to make light of it by telling Cody he now looks more like Dave. His response? "Not really, I have a skinny bum and tummy." ouch!

This is the update for now and are hopeful that next week will bring more steps forward. You all have been so faithful about keeping us in your prayers......thank you.

The Days

Thank You for Your Constant Prayers

June 19, 2009

Dear Family and Friends,

Since last update we have been blessed with excellent days. Cody has felt better overall, on less pain drugs, hence more coherent, back into physical and occupational therapy and is showing improvement with both his dexterity and overall physical, eating like a horse, has gained weight, no more stomach issues, all of his blood counts have improved, the infection in his broviak line (catheter) has come up negative 3 days in a row so we don’t have to have it replaced, he has a great attitude (cocky as all get out – which is a good thing as it means he’s feeling more like himself J). Wow!!!! Amazing answer to many prayers. So very much to be thankful for. The power of prayer is an amazing thing to watch unfold. Thank you God for listening to the many, many people praying for Cody (and us), thank you all for caring enough and loving us enough to pray us through this.

The current plan is: He will be on IV antibiotics through 6/24..as is protocol to treat infections in broviak lines, last night was his last night to have TPN (IV nutrition in a bag) because he is eat ing so well; we are slowly weaning him from the pain meds with the idea that when we go home he will be off all IV everything having only oral medication and working diligently physical and dexterity recovery.

We look forward to going home...maybe 6/25? Thank you for your diligent prayers.

Love,

The Days

Please coninue to PRAY for Cody

Dear Family and Friends,

I have been meaning to get an update out sooner. I keep thinking that I will have more information and time "tomorrow"; however, it seems, this roller coaster ride is unending from one day to the next. We have our good days that we celebrate, the bad days we roll with.

He got his very last radiation treatment 5/26. He has m ore chemo to go after the last one he received 5/21. Because he had difficulties, again, right after receiving chemo, we have switched to plan C as far as a chemo map goes. From here on out, he will be taking "out patient" oral chemo…..less harsh as he cannot tolerate the original plan(s).

Shortly after the last update, he started having stomach issues. Food would go in and immediately out. So after all of the begging we did to get him to eat, he is now told to he has to be on a liquid diet so his stomach and intestines can heal. How cruel is that? But, he was a sport and savored his red Jell-O and broth. He is now eating regular food and enjoying every bite. The stomach issue seems to be resolved.

Since the last update he has been receiving pain medication through IV and a push button on demand. His feet and legs cause him great pain. The rest of his body is tender too, but nothing like his feet and legs. He has been on pain medication for three weeks, his body has become accustomed to it, and therefore the medication is no longer effective. On Wednesday, they changed his medication to another pain narcotic. On=2 0the switch, they reduced the dosage so he could ease into the new. Hence, we had a couple of very rough days/nights adjusting to the new to get the right combination of continuous and demand doses.

On 6/5 they took an x-ray of his feet; nothing to indicate the source of his pain. On 6/10, he had an MRI of his legs and feet to try to find the cause of the pain…still nothing. He is receiving medication to enhance bone marrow growth, which the doctors believe could be part of the source of pain. The other factor is that radiation continues to do its job for weeks/months after treatment and could cause inflammation, in Cody’s case his spine, where all of the nerves are.

He had an MRI on 6/5 of his brain and spine. Per the doctors, the tumors on his spine are reduced. Yeah! Thank you God!! Some changes on the brain, but they believe it to be treatment related/scar tissue, not tumors. Great news, as it appears the nasty chemo and radiation are doing what it is supposed to do to the tumors.

The most recent hurdle is that he has positive culture in his broviak line (infection). He had a fever for a couple of days, another reason his white counts and platelets were not improving as expected, because his body was busy trying to fight off this new bacteria. We are waiting the results for the most recent cultures, if they continue to come up positive, we will have to replace the broviak line…yet another surgery and challenge.

After chemo 5/21, his body had to fight to get his stomach issue resolved, the pain and now this….using precious white cells that he needs to recover and feel better so he can continue treatment to kill the cancer. At this point we are only a couple days behind the chemo schedule due to the unexpected challenges; his white count s and platelets need to be much higher to continue treatment. So we wait and pray.

At this point, he has limited use of his hands and feet. It is difficult for him to stand on his own, due to the pain and nerve issues. He started physical and occupational therapy last part of May, however, he has not been able to exercise since 6/4 due to pain. On June 4, my birthday, he mustered the strength to walk with his walker way further than we expected. I told him that was the best birthday present ever!! But the following day and since, he was just in too much pain to exercise. We are hoping and praying that with the switch of pain medication, the discontinuation of the medication that enhances bone marrow growth (hopefully in the next couple of days) and the reduction of inflammation (in time) caused by radiation will ease his pain so he can get back on track to recovery. As a parent, the most difficult thing ever is to see your child crying out in pain and not being able to do anything about it….particularly when you can’t even hold him close because it hurts too much…..it brings you to tears

Yesterday as Cody was coping with pain challenges, he yelled “Cancer Sucks!!! I had to agree with him. It really, really does. The first time around was a cake walk compared to this time. He endured the treatment with the sickness and generally feeling lousy first time, which was bad enough...but this time it is that PLUS the many challenges and obtacles thrown at him. He is growing weary of it all. He just wants to feel better and not be in pain. He doesn’t mind so much that his hands and feet aren’t behaving right now...it’s the pain that wears him down.

We feel very blessed to have so many faithful people praying for Cody/us and so many kind and giving people helping us out in this difficult time. We can’t thank you enough for your kindness and continued prayers.

Please pray for:

• Cody’s pain to go away
• Cody’s body to heal
• A big dose of strength, courage and will to keep fighting
• Our continued faithfulness

Humbly,

The Days