The Big C

Yeah...that big C word has reared its ugly head again. I guess we've all been waiting very anxiously for that word to be on the table again. Now that his stomach is closed and he's gaining strength...well...the cancer treatment is back in the discussions.

Thursday was a day of ups and downs and a lot of emotional frustration. First, they couldn't remove the trach because he still requires some oxygen at night. They knew that though! So why take him down to the ICU to remove it and then decide not to take it out??

Then, the oncologist FINALLY called a meeting with Michelle to show her the tumor. The picture was every bit as scary and every bit as big and dangerous looking as we had imagined. Like the doctors at Mt. Clemens had said, it is big and it's all the way up the back of his abdomen and touching all of his organs, as well as some very sensitive glands. This is the reason it cannot be removed surgically. It would be certain death if they were to hit one of these particular glands that it's sitting on.

But then, a glimmer of hope in the conversation...the tumor looked to be mature...non cancerous. Something he would just have to get used to living with...something his body would adjust to, but cancer free! Cancer free? Really? As Michelle left the meeting and tried to digest all that the doctors were saying she started to have questions. She was trying to reconcile this information with the fact that Tyler's pain is high and he has continued nausea and exhaustion just like he had back in September:

• What will his life be like with this tumor?
• What about the pain? Will he be on these methadone pain killers his whole life?
• Will this tumor ever be able to be removed or partially removed?
• Will his stomach work properly again or will they go home with all of these drains and tubes?

As she thought of these questions and waited for the oncologist to come back, they continued to sit in the ICU waiting to go back to the Rehabilitation floor. What was the hold up? Why weren't they moving him back up there since they weren't doing the trach removal?

Then a different oncologist came in, just hours after the other was reassuring her that Tyler was cancer free, with this news...blood work is back and the cancer markers are all up...they are very concerned about his lymph node on his neck that has been swollen! He still has cancer and it's active! Ugh! So, the other C word...chemo therapy...is now needed immediately! Talk about a roller coaster ride of a day.

From hope back to devastation!

Needless to say, after all of the miscommunication and non thorough doctors, Michelle and Tyler are left frustrated and having a hard time trusting the doctors at all. But, they are at the mercy of their plans. So, Tyler has now been moved to the cancer floor and is starting chemo tomorrow. It will be the same chemo that he first started back on Oct 1st.

Here's how you can be praying for Tyler, pray that:

• The doctors will have wisdom and unity and will present thorough plans with clear communication
• Tyler will not have such a sever reaction to the chemo this time around (you can imagine he's scared after what happened the first time)
• Continued strength - Tyler needs physical strength to fight this brutal disease and the chemo's side effects
• Emotional strength for all of us that love this boy so much! The exhaustion is taking over, the emotions are high and we need renewed strength...especially his momma!
• That the chemo will do its job and shrink this tumor and kill this cancer - and in the meantime his major organs (currently concerned about his liver and kidneys) will be protected and not impacted by this nasty tumor!
• That Tyler will be completely healed and restored!!

 
 

Continued Progress

Tyler continues to make progress with his stomach recovery. He looks so much better!! I'm not sure if it's because he's moving and awake, or because some of his hair is growing back, but the difference is amazing!! He is working very hard. Most days, they have him busy with physical therapy from 8:00 - 5:00. So, he's pretty exhausted too.

Tonight he is heading back to the ICU to get his trach removed, another step in the right direction! He should only be in there for 24 hours while they monitor him after the removal.

Still no word on a treatment plan for the cancer or tumor. We are so happy at the progress he's making with this recovery though. Thank you for your continued support and prayers!

Out of the ICU!!!

The New Year is starting off in the right direction. After 3 long months, Tyler has been moved OUT OF THE ICU!!! Woo Hoo!!

He is now on the rehabilitation floor. It will be a lot of hard work over these next few weeks, but we know Tyler can do it. On the road to heading home...

The above picture is a snapshot from some T-shirts we have leftover from the fundraiser. We only have about 20 and they are various sizes of L, XL and 2XL. If you're interested in getting one, we're asking for a $10 donation that directly benefits Tyler and Michelle. You can make the donation by clicking here: http://www.gofundme.com/1drbvk. Then, send me an email at jetfields@yahoo.com with your size preference. I'll do my best to get it out to you in the size you requested, but can't make any guarantees since we have limited quantities. Thanks for your continued support!!

The last stomach surgery!

Well Friday's surgery went well. They were able to put the mesh in as they had planned. Baring any emergencies or complications, that is his last planned stomach surgery. Now the rest of the healing begins.

The doctors weren't lying about the painful recovery. Tyler is in a lot of pain right now. He's saying he's at level 9 even with all of the pain meds they are giving him!! Last night when I was with him, he was refusing to get his trach suctioned because he knew it would cause him to cough, which would hurt his stomach. And when the nurse told him he had to get a bath, a look of pain and anguish came over his face! The poor kid! He made it through and got suctioned before going to bed, though.

He had a bit of throwing up in the middle of the night and a lot of coughing, which didn't make for a good full night's sleep. But he was resting when I saw him this morning.

If the recovery goes as planned, we are looking at February before he gets to go home. Of course, that is only the stomach healing and not the cancer. Still no plan has been presented for the cancer.

Thank you for continuing to pray for Tyler. Looking back on these 3 months, I can say it is a miracle that he has made it this far! We are continuing to put our trust in the One true God! May His will be done in Tyler's life!!

A Pretty Rough Week

Tyler has had a rough week. He's pretty much been sleeping since his surgery last Thursday. He wasn't breathing deeply enough and his carbon dioxide levels were too high. So, they put him back on the cpap (not the ventilator, but the step down that helps wean him off of the ventilator.). Michelle knew something wasn't right the other night, with his breathing, and alerted the doctors and the nurses. They caught it in time (way to go mom!) to prevent him from having to go back on the ventilator, but he's still not happy about being on this thing.

He had another surgery Christmas morning. They cinched his stomach again and drained some fluid from his lungs. They feel that they cannot pull his stomach together any more. So, tomorrow, they are planning to put a mesh in his stomach. They said it's a very painful surgery and so he will be put under and have an epidural for the pain. The next 5-7 days after the surgery will bring him a lot of pain as well.

I wish I could be bringing you more uplifting news, but this is the reality of it for now. Tyler has now been in the ICU for nearly 3 months, at UofM for 4 of those weeks already. This battle is much longer and much harder than any of us had anticipated that it would be, but we're continuing to take 1 day at a time.

Please pray for a successful surgery tomorrow and for Tyler's pain levels as he heals. Also continue to pray that he will be a favorable candidate for one of these cancer trials, as he will be embarking on that battle after his stomach heals.

Some News from the Oncologist

Finally, after so many weeks with nothing, we do have some news from the surgical oncologist today. It's not the news we were hoping for, however. The surgeon has met with the adult cancer surgeons and the pediatric surgeons. The tumor is not operable at this point. They said it is like cement on all of his organs.

They are trying to get him into a trial. They need to do some more biopsies in order to see if he can be a candidate for the trial they have in mind. If that doesn't work, they will try another one.

Please pray for Tyler. I know you are already, but today's news is so disheartening. We are all emotionally and physically drained. Tyler (and his mom...and the rest of us) need renewed strength and hope. Please pray that he will be a match for the right trial. Please pray that they will find a breakthrough for him. Our family is continually grateful for your thoughts and prayers these last few months.

No big changes

Sorry for the lack of updates. There haven't been many big changes going on. Tyler is still in the PICU. He's still making progress in terms of his stomach closing. He has about 10 centimeters to go still until it is closed. So, he goes to the O.R. every couple of days and gets "cinched" together a little more. You can imagine it's pretty painful. So, he has his good days and his bad days with the pain.

They are also continuing to push him on his physical therapy. He sat up for a couple of hours in a wheelchair last week. Although painful and exhausting, he did it.

He has been running a fever and been throwing up a bit too. They think that may be due to clamping his G-tube (drain from his stomach). They are trying to get his stomach back to working on its own, so this is part of the painful process.

We do have a praise report. Michelle received a letter that his insurance coverage will continue until at least November of next year. We are so grateful! I cannot even imagine what his hospital bills would look like at this point. I'm sure we're approaching $1million, if he hasn't already gone over that amount.

Another praise report has to be the Ronald McDonald house. What a huge blessing they have been to the family. They have made a room available for us every night since he has been there. Local charities bring food in every night for all of the 29 families that are there. And, since they know we'll be there celebrating for Christmas, they have already offered us up one of the common areas to reserve for our family. So amazing! Now if only we can wheel Tyler over there to join us. I doubt it, but I can be hopeful until then!

I can't thank you enough for your prayers. Tyler is so blessed by them too! When his grandma mentioned to him that she was praying for him, he jokingly said back to her, "You need to get people praying for you, I have tons of people praying for me already!" So, thanks again.

We are still overwhelmed by your care, concern and generosity. But, we still need your prayers too. Thank you for continuing to keep Tyler in your prayers. We're still believing in our Healer for a full recovery and a plan to take care of that nasty cancer tumor!