After Several "Rascally" Moments... We're Home!!

Well folks... it's official. We are HOME!!! Horray! We got discharged from the hospital yesterday as Tim was doing so well they no longer needed him there. Here of some of the events that transcribed in the meantime...

Monday morning I arrived at the hospital after having had a nice weekend with Ken, the elevator doors opened, and I see a crib coming down the hall toward me. I squint and see a kid that looks like Tim, wait no... it is Tim getting wheeled down the hall coming up from x-ray! "What happened ?!" I exclaim. "He pulled out his Broviac", says his nurse. Well... for those of you who don't know, this is the tube that was inserted into Tim via surgery 4 months ago that goes directly into the chest and up to the jugular vein. And apparently, at six in the morning, Tim had had enough of it and yanked it out!! The nurse found him sitting in his bed waving it around, bleeding, enitirely pleased with himself. Can you say "YIPES!" What a scare!! But they say this happens more often with other kids. However, normally it takes several people to accomplish this feat. One nurse applying counter-pressure while the doctor yanks it out. Dr. Gunnerson said, "Well, I guess we know he is feeling better to be able to do that!".

So that was how my week started. The other issue was that now Tim has no access site and so they were going to need to put in a peripheral IV in order for him to get the contrast injected for the CT scan he was supposed to have yesterday. They put him out with gas, and then tried to get a line going. But apparently all his veins are quite collapsed from the chemo and are also still wrecked from trying to get an IV for surgery. So after starving the poor kid until 3pm and going under yet again, they had to cancel the CT because they couldn't get an IV. This was extremely aweful at that moment and I was wanting to scream. After all this poor kid has been thru... Now we have to go back and do it all over again. Hopefully they will not have to put in another Broviac but we first need to see the pathology report as to if he needs more chemo. I think this "feat of strength" was Tim telling all of us... "That's it! I am DONE! No more chemo!" Well... here's hopin'! Now we wait for the report which will arrive either before or after Christmas. At least they didn't have to keep him in the hospital. Horray! Home in 5 days ain't half bad!!

A rarity... a good picture of Kate that she let me take!!

Visiting with big sister Kate

No new doctor reports today but overall Tim had a great day compared to yesterday. He got moved to the ward and out of PICU, which is good. He was actually sitting up in his bed playing and reaching for things! And only 48 hours after surgery! I tried picking him up this morning because he wanted to come, but he cried out in pain and so I put him back down. Then later in the day, Ken tried and up he came! He kept peaking out the door at the nurses station trying to find someone he could show-off for! Too cute. He even got to go for a wagon ride around the hospital! He was standing today too! Unbelievable for having a 4 inch scar above your waist.

Timothy is still on morphine but we will see if we can cut it down tomorrow as he is doing so well. Who knows... maybe we will get to go home soon...??

Good News!

Well... He did it! Tim survived his surgery! And in record time! After preparing ourselves for an all-day surgery of at least 8 hours, both surgeons came out to talk to us at 12:15, after only 4 hours. My heart skipped a beat wondering why they were both out to talk to us, since we were expecting only Dr. Cameron, who was to come out and give a report after his part was complete. They said that the surgery went very well and that they took out as much as they could, and that there was less than 5% of the original tumor remaining!

For those those of you who don't like details, you can stop reading here and just know that the guardian angels in the O.R. had their hands on Tim and that one enormous dose of prayer coming from the mouths of likely 1000 people made all the difference in the world. God answers prayer! He is almighy, and powerful beyond belief! Tim is sore, but doing well on morphine. He seems to be almost himself today.

Here are some more details... if you are interested...
There was almost NO blood loss (unbelievable since during the first surgery, they would just "look at it and it would start to bleed", said Dr. Gunnersson). He also said that the chemo had certainly worked as the tumor had shrunk considerably, that it was very hard and had only a small blood supply. Because it was so hard, it was very adhered to the surrounding structures, including the nerves. They did have to cut one nerve (they think it was L1) because the tumor was completely wrapped around it. They also think this nerve was likely not working already anyways because of how squished it was. We won't know which nerve it was for sure until later, but Tim is already kicking both legs! The rest of the tumor was too dangerous to remove, so they left it. They also only went in ONE entry site, from the side. (they were anticipating two sites)
Right after, when Tim was still knocked out, they sent him for another MRI, the results of which we are still waiting for. There was concern from the MRI two weeks ago that the tumor may have started to spread into the nerves in the area because they lit up on the MRI. It is also possible that they lit up only because of being inflamed. So they did a lumbar puncture after the MRI to check his spinal fluid.
Now we wait 7-10 days for the pathology reports from the biopsy of the tumor, checking if it has chaged at all, if it is just dead tissue or not. Then they decide if we just observe for now, or if he needs more chemo.
Phew... what a mouthful! So today Tim is still in the PCCU but is well enough to move to the ward as soon as a bed opens up. Oh yah... they also extubated him right away and took out his catheter! Last time it was 2 days later! This morning Tim took of the rest of his heart leads so they just left them off. See... he is being feisty already!
I want to take this opportunity to thank each and every one of you for all your prayers and thoughts for Timothy yesterday. Ken and I felt such peace about the whole thing and couldn't believe how fast and well everything went! He didn't even need a blood transfusion! Wow! Praise God! So now we wait again for pathology reports but you know what? We don't even really care because this part is DONE and the cancer is almost GONE! And Timothy made the doctors come in and scratch their heads and say," Wow! He is doing this good?" and they both looked quite surprised. That's what a heavy duty dose of prayer will do...
I love you guys so much! Thanks again!

We had our meeting with the surgeons today (well... actually only one as Dr. Gunnerson was home ill). We found out that they will be going in through the side to reach the tumour in the muscle. They will be able to move the organs forward and get in behind them where the psoas muscle is. There are risks involved here which include cutting nerves or arteries in the nearby region. Dr. Cameron thinks this part will be about 3 hours. After this, the neurosurgeon will enter through the back and take out as much of the spinal component of the tumour as possible. Risks include blood loss, infection and paraplegia. This part will likely be another several hours. I am guessing this will be another 8 hour surgery like last time. Tim will also probably need a breathing tube in for 24-48 hours after surgery so the pain medication can take effect before he wakes up.

In other news, they tried a new way to change Tim's dressing so that his rash under the bandage can clear up. Poor Timothy is still VERY itchy and it's driving him crazy! This is so much for one little guy to go through. Please pray this week for strength and also for the surgeons. Pray that Dr. Gunnerson will be well soon so that he may operate on Friday.


Thank you everyone!

No more residents PLEASE!

Hi everyone! Today was a clinic check-up and pre-op appointment for Tim, which went fine. The pre-op appointment was at 10 o'clock which consisted of sitting in a narrow hall with about eleven other kids, their parents and their buggies, and 6 or so nurses. We waited quite a while, saw a nurse for 5 minutes to answer some questions, then waited again in the hall to see the anaestisiologist (sp?)... which was at 11:15! Yipes. And, of course, it was a resident. Now, I have no problem with Mac being a teaching hospital and all, but seriously, after all we have been through, the last thing I want to do is G-O, O-V-E-R, E-V-E-R-Y DE-TAIL... Really... really... SLOWWWWWWLY and then once that is finally done, WAIT while he checks with the doctor!!! Argggggggggggggggggg... Okay. I am done venting now. Sorry about that. (Ahem... collecting self) Where was I??

Well... Tim's usual clinic was able to do his bloodwork there so I didn't have to go to another floor and WAIT AGAIN. So that was good. Tim is just really itchy lately because it is all red and irritated and rashy under his dressing on his chest. Poor guy... to have that on so long. I tried some Emu oil on it tonight so we will see how that goes. I really don't want to put on any more medication. At least Tim is much more patient than I. He sat so nicely waiting, just smiling at everyone and playing with toys. Him being so good-natured is such a blessing!

That's all folks. Thanks for being my listening ear...

Well, today is Tuesday, and it is also when Timothy would normally being recieving chemo right now, had he not been FINSHED IT!! Horray! He has been extra cranky and not sleeping well the last three days, which is usual for day 19-21 of his chemo cycle. But since today is a new day with no chemo... I have been noticing that he seems to be himself again! Hopefully he continues to strengthen up, get lots of sleep and have his spirits lifted during the next few days as he prepares for surgery.
The doctor says they may have to go in from the front and the back in order to get out as much of the tumour as they can. This could be a nasty surgery especially in terms of recovering. I am wondering how I will be able to hold him and change his diaper and such with two wounds. I am praying that we will be able to be out of the hospital and home before Christmas. To all my Prayer Warriors... keep praying!! And thank you so much! It's pretty cool to see how God has been looking out for Timothy. How he has only needed blood once, how he has had only one extra admission to the hospital, and how he has only had a fever ONE day! (Just so you know... this is pretty much unheard of. Most kids are admitted many times and receive blood transfusions regularly. Many also end up needing gastric tubes because they cannot eat anything.) That's clearly the hand of God at work in my little man's life. Uh-oh... just started crying. And it had even been two whole days tear-free! I suppose I just get so emotionally overwhelmed when I think that the One who created the whole world cares so much for my little Timothy and for each and every one of us. How awesome and incredible is that?! We can all rest assured knowing that "His eye is on the Sparrow"...