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"...

Surgery is Booked

I talked to the doctor today and surgery is booked for Friday, December 12th and we have a meeting with the two surgeons on Monday the 8th. So in the next two weeks, we hope to continue getting ready for Christmas, strengthen Tim up and try to do some relaxing. (Yeah right!) Please continue to uphold us in prayer during this trying time. At least we now know and don't have to wonder anymore...

The Verdict's In...

So we had our long awaited meeting with Dr. Leibermann today to go over the results of Tim's scans from Monday and Tuesday. The chemo has been working and then scans show that the size has been reduced about 50%. The cancer has not spread anywhere else and the chemotherapy is finished. (almost for sure). Praise the Lord! However, they do want to remove the rest of the mass as much as possible through surgery. There is still tumour in the original location (which includes the right psoas muscle (behind the kidney) and thru the nerve foramen and in the spinal column.) General surgery will address the muscle component by going in thru the front and the neurosurgeon, Dr. Gunnerson, who we had previously, will also be there to see if it is possible to get anymore of the tumour out of the spinal column safely. It will be a team effort.
We don't have a date booked yet as spots are tight for the O.R. But the doctor said it should hopefully be within the next two weeks. So if you could pray for an opening, the sooner the better! This is still a very risky surgery so we still need to meet with the surgeons to go over the procedure. We also need to to decide on the risks of NOT having the surgery as the tissue remaining could just be dead tissue and fine to leave in. Dr. L. recommended the surgery route but nothing is set in stone yet. I will keep you posted. They should be calling soon to arrange a time for surgery.

MRI complete

Tim had his MRI this morning, which went quite well... considering that making a baby fast is not so fun. However, he did great and didn't even complain too much. Last night the latest he was allowed to drink a bottle was 2:00 AM so I was going to wake him up then, but it was really neat... Ken and I were reading some Bible passages and praying for Tim at 10:30 last night and he woke up crying. He NEVER wakes up so this was quite odd. Turns out, Tim just wanted to join us as we prayed for him. He downed an 8 ounce bottle (which he also never does) and had a snuggle, and back to bed he went with a full tummy. He also woke at 1:40 AM because he was stuck on his tummy. I tried another bottle but he didn't want it. Then this morning he stayed asleep until 7:15 when we had to go. Pretty amazing...

It was funny watching him wake up after. He was so groggy and drunk on Propofyl (sp?) which is a general anaestetic. He took a good 40 minutes to wake up and then his head was bobbing all over and he was all wobbly. Poor guy. But now we are home and he is sleeping. His counts were good in the clinic as well. Now we just have to do it all over again tomorrow for the CT scan. Oh well... one down, one to go! God is good! Please keep praying!

Results Pending

We are enjoying our time at home and had a nice weekend with the family. Saturday night we put up the Christmas tree and decorated the mantle. (pictures coming soon) It looks so nice and homey here now!



Tim has his MRI booked for Monday and his CT scan for Tuesday. He has to be put for both of them and has to fast 6 hours prior, so if you can keep him in your prayers, that would be great! We will keep you posted on the results. Right now he is doing great. He had good counts on Monday at clinic and there is another clinic visit Thursday.

Asleep at last

Well... it's done. Round 4 is officially over and we are heading home in the morning. Timothy did much better the last 2 days except that yesterday he did not sleep AT ALL during the day! He gets really wired from the drugs and it is just so noisy there. Something is always beeping and people coming in and out. He had a couple short naps today and was much happier afterwards. Thank you for all your prayers and please keep them going the next couple weeks as we await the CT and MRI which will determine if treatment is complete or not. Here are some of the photos from the Ronald McDonald photo shoot...

Is this this final round??

Today is Wednesday already and Timothy has already undergone his first day of hopefully the last round of chemo. He was in good spirits as we arrived, and has already had his first photo shoot as the new "poster-boy" for the Ronald McDonald house. That was pretty neat. They had a professional photographer come in took about 50 frames in the Ronald McDonald family room. It only took about 15 minutes which was good because Tim was pretty tired. You gotta wonder what he was thinking with this big camera pointed at him and the lady bocking like a chicken to make him smile. (I told her to bock as chickens are Tim's favourite!) Too cute.

So yesterday over three hours they pumped in Carboplatin, Etopiside and Doxrubicin. A nasty, potent cocktail of chemo drugs. It's pretty amazing that Timothy starts to get cranky within about 20 minutes of the drugs going in. Then the rest of the day he is restless, can't sleep and kinda grumpy. Poor little guy. He sure is a fighter though! This morning he was just like new again! All smiles to see me and feeling much better. He has a few hives and is kind of itchy, but they are going to keep an eye on it. Besides, he has one of his favourite "girlfriends" as his nurse today so of course that makes him feel better too...

Some recent photos

Here are some of our recent photos including a make-shift bath on the floor in Tim's hospital room. (He wasn't allowed out all week so we needed some excitement!) Ken is wearing a mask because he had a sore throat. Also, you can see how Tim is bearing weight standing now!

We're Out!

Hey everyone! We are now out of the hospital and enjoying our new home. On Monday the repeat cultures came back negative, leading the doctors to think that it was only a contaminated sample to begin with. This means we were there a whole week and there was no infection! Argggg! He did have a fever though, which the doctor couldn't explain. I just think it was from teething or something. Tim got 4 teeth in one week, and yesterday he got 2 more! So at least we get to come home for a week before we have to go back. Next week is the fourth and hopefully final round of chemo! I am so excited you have no idea! He has a CT scan booked for Nov 25 but no word yet on the MRI.


We are much more settled now as the house gets more and more finished. I am learning how to use my new kitchen. The stove is a cookstop with all touch buttons, no knobs. It will take some practice. Hopefully laundry will be hooked up tomorrow and we should be getting the dishwasher. It's amazing what you take for granted until you no longer have it.


We enjoyed the weather the last few days, taking some time to try out the swing and meet the kids next door. Tim is totally his old self, Mr. Happy. He is turning into quite the ham as his little character is shining thru. He is always making us laugh and pulling faces and waving his arms around frantically.


That's all for now folks...

Had a nice time this past weekend with Ken coming down Saturday at noon and staying until Sunday evening. Kate came Saturday evening with Grandma and Grandpa Sommer, had a short visit with Tim and then we went out for dinner. Kate is so precious. It was so cute to see her. You can tell she really misses us all being together. (as do we!) Hopefully we can be together soon.
Ken and I spent the day with Tim, Ken getting some much needed rest. We are such polar opposites as he is crazy busy all week and just wants to do nothing, and I am bored out of my mind and can't wait to go somewhere! So that makes it hard for us to spend time together and agree on activities! I am hoping to get some answers today as to when we can skidaddle. (boy... that's a funny word when you type it out!)

Anyways, I keep taking it one day at a time, as that's about all you can do around here...



Love you all! Have a great week!

Still Here...

Well... we are still at the hospital and have been since Tuesday. Timothy is still in isolation as his blood cultures came back postitive for bacteria in both lumens of his Hickman (access site for chemo) and yesterday they also did a repeat culture to make sure it wasn't just a contaminated specimen. This also showed postive. The good news is that although he has an infection in his blood, he has been on IV antibiotics since he got here so they started working right away. He hasn't had a fever since Tuesday which is also good. They told us that the earliest we can go home is Monday but who knows? They don't really tell you anything around here unless you drill them with questions. Sometimes it seems as if a lot of the meds are trial and error until they get the right one. I guess we just have to trust the docs and out our faith in God that the right treatment will be given and that it will be successful.





Yesterday Kate came down with Grandma to be in the costume parade. Lots of people come from the community and give out candy and crafts and all kinds of stuff. Kate was in her glory parading around as a bride, complete with high heels and all! Each kid got a stuffed animal, a costume if needed (donated by Disney!) and got to do some cool crafts after. It's pretty amazing how they treat the kids here. I took some cute pics but I can't upload them until I am home unfortunately. Kate and Tim also got to meet Elmo which thrilled them both to pieces. Speaking of thrilling... I went thru the car wash last night. That's right folks. This was quite the excitement for me on a Friday night. I don't get out much. Ken had a meeting Saturday morning and so he didn't come Friday. So I had an adrenaline rush with the touchless car wash and a great chick flick. Yep. Fun.



Anyways, I am really missing having a normal life. I miss my patients a great deal and can't wait until I can practice again. My dad is doing a great job filling in but I really miss everyone! Most of all, I miss not having our whole family together. That's probably the hardest part.



I hope I can see you all soon! Thank you for your continued thoughts and prayers.

Home?

I arrived this morning to find Timothy in good spirits, his counts are great, and the fever is gone. Horray! The nurse said he has a 50/50 chance of going home today but it depends on how many days he needs the antibiotics. I'll keep you posted...

Back to the hospital we go...

I know, I know... I haven't updated the blog lately and so many of you are in dire straights just waiting in anticipation! Well... here it is...

The reason I haven't updated lately is because we got home from chemo Friday, stayed at my parent's that night, moved, the house wasn't quite done, I had no computer, I was crazy busy unpacking and trying to find everything all the while I was trying to take care of a grumpy boy and a very boisterous girl who insists on putting on her princess dress from the moment she wakes until bedtime! Not to mention, Tim had a borderline fever Monday at clinic that we were keeping an eye on. He was very not himself and not sleeping. Tuesday morning he had a fever so we called the hospital and they said to bring him in b/c his counts were on the way down and he could have been neutropenic and therefore prone to illness. So we headed back to Hamilton, got checked and since they couldnt figure a reason for the fever, they wanted to admit Timothy until they could get the swabs back to check for bacterial infection. But... no beds. They did some IV antibiotics in the clinic right there and Tim was able to get one hour of sleep (all day!). Grandma Vera came to pick up Kate since we had to be there a while or stay indefinitely. Kate is such a trooper. Never knowing if she is coming or going or where she will be going that day. At least she really enjoys Grandma's house and she doesn't cry when she has to leave me. Who knew a 3 year old could know how to "be strong" like that. This all must be quite hard on her and I feel so bad that I can't be with her more. But you gotta do what you gotta do I guess.



Anyways, we waited for a bed and were told we may have to go home (which I didn't feel right about since we are 40 minutes away). I once again felt displaced and shed a few tears in the clinic, still trying to be strong. Then, wouldn't you know it, God provided, just in time, and a bed opened up in 3C, which is just down the hall. He has a private room right now b/c he is still in isolation.

He had to have his first transfusion today since his hemoglobin went down to 63 and with each round of chemo, the body has a tougher and tougher time recovering. He his hooked up to all kinds of wires and blood and stuff. His IV became disconnected today when moving him from the highchair to the bed and it was leaking on to the floor. It was a good thing I saw it b/c his blood started travelling down the tube and out and he could have bled out! Yipes!

Well... that's about it for now. We appreciate your prayers, especially now as this is an unexpected hospital admittance we weren't mentally prepared for. And they won't say how long we will be in, but likely until the end of the week or more.



Blessings!

Shauna

p.s. I enjoy reading the comments people write on the blog, so thanks for those!

What a week it has been so far... and it is only Wednesday! Monday we had clinic in the morning which showed that Tim's counts were good enough to begin round three of chemo. Then we drove back home, dropped Timothy at Grandma Jessie's house (Kate went to Grandma Vera's on Sunday night.) She said good-bye to her room and the house before she left and she didn't seem to care at all that she would never be back. I suppose it may not register in her little mind entirely but she does know a lot more than we think. Anyways, after I dropped Tim off I went to check on the house to see if they needed me to direct packing stuff. They seemed to have that under control so I headed to the new house to label my kitchen cabinets with little post-it notes so that the movers would know where I wanted stuff and so that I would have at least some knowledge of where things were when I returned. It was a very emotional day as I felt displaced, homeless and un-needed.

We ate supper at Ken's parents and then I headed out to check in to the hospital and Ken went back to the house to install towel bars. He is trying to run his business, move, finish all the unfinished stuff, disassemble his computer network, pack the office, babysit about 50 trades, reassemble the network and get it all running again to make sure payroll can be done by today. What a guy! He has such stamina, I don't know how he does it. But last night he called me from our new bathtub at 11:00pm while sipping on some Bailey's to celebrate, and it looks like it is all coming together at last! Horray Ken!

Anyways, Tim was a different person once they started the drugs. He became quite aggressive, couldn't sleep and was looking pretty doped up by the end of the day. Kate and Gramma came to visit and it was nice to spend an hour playing with Kate while Gramma visited Timothy.

Well...today's another day. Hopefully he won't be feeling so yucky and will be able to sleep. Please pray for patience for us all.

Waiting for Round Three...

Well... the time just keeps on flying by here in sunny St. George as we await round three of chemo next week and also MOVING! Timothy will go into the hospital Monday night and then have 3 days of treatment, and when we return, we will have to go to a different house! Very weird. It is a little nerve wracking that people are going to move all our stuff and I won't even get to be there! I hope all goes well...

Tim is having a better week as in the last week, counts go back up, he gets to stop his GCS-F drug and clinic visits are once a week instead of twice. We have still been keeping him mainly at home but we take trips to the new house and we got to go to Grandma Vera's for thanksgiving.

Oh... he just woke up... I guess this will be a short update. Bye for now!

Giving Thanks

As of yesterday, Tim was officially neutropenic for the first time as his white blood cells were 0.4. This means that any little germ could make him spike a fever and he would have to be admitted to the hospital since this would be life-threatening. His hemoglobin was borderline low but I suggested to wait on a transfusion because last time it had gone up on its own. All day yesterday Tim was pale and yelling and seemed frustrated. He went to bed at 5:30 pm and slept until 6:20 am! Then he was still sleepy today so I took him in for a check, prepared for a 4-hour blood infusion. And guess what? His hemoglobin was up to normal and his white cells came up too! Horray! No infusion! I suppose his fatigue was just a side-effect of the chemo. And now we can go to my parents' for thanksgiving as long as they are not sick! Thank you God!


(we still have to be careful as his counts could come back down... but at least we can be at peace about it this weekend.)


We are looking forward to turkey and the great outdoors! I can't wait!





Happy Thanksgiving to everyone! We sure have a lot to be thankful for!

A Roller-Coaster Week

Hi everyone. This week brought a few tougher days and I didn't want to update the blog while things were a little rough around here. This past round of chemo was rather hard on poor little Timothy as three heavy-duty drugs were given over three hours. Tim felt really yucky during and after the chemo. He has been quite noxious and has been throwing up a lot more. (This including but not limited to throwing up right in front of the elevator at the hospital on the way to a clinic check-up all down his cute little outfit and into the buggy... Yummy. And I do not do well with puke.)

Anyways, today was kind of a whiny, clingy day where he didn't want to sleep or eat and is a lovely shade of green. Please pray for strength for our family as we go thru this difficult patch. Especially as we are moving in 2 weeks and trying to pack and get things ready with 2 stir-crazy kids. It's hard for Kate to not play with her friends and she has been talking about them a lot and missing them. Becky Hum. came over today to help with packing and it was nice to have some help and some company! And nice for Tim too to have someone to flirt with!

Yesterday was a really amazing day as my Grandpa (aka Diedushka) came over to the house. At 84 years of age, he flew all the way from B.C. to come to the 100th anniversary of the Russian church in Toronto. He was (and still is!) a minister and he came to the house to do a blessing ceremony for Timothy. He did a short message about James 5:13-18 which says;

The Prayer of Faith

13Is any one of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. 14Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. 15And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. 16Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.
17Elijah was a man just like us. He prayed earnestly that it would not rain, and it did not rain on the land for three and a half years. 18Again he prayed, and the heavens gave rain, and the earth produced its crops.

Then Diedushka put olive oil on Timothy's head to represent the Holy Spirit covering him. He asked God that His will would be done, whether He choses to heal Timothy or not, that this whole situtation would bring glory to God in some way even if we do not understand it. Then we all sang the old hymn, "Hallelujah, Thine the Glory". Man, were the tears a flowin'! What a powerful, awesome day. I have never seen anything quite like it.

Diedushka also mentioned how when he had his heart-attack 3 years ago and he was laying on the table, he said to God, "Lord, if there's anything else you need me to do, I will do it. If not, you can take me home". Then yesterday he said to Ken and I that God kept him alive all this time just so he could do this today for Timothy. Wow. That's all I have to say.

The perfect tree for a swing...

Tim's new frog pond to promote tummy time

Tubby Time!

We had lots of fun today with grandma Vera having a "faux" bath, since Tim cannot be officially dunked due to the tube in his chest. So this was our splash/sponge bath. As you can see, it was very exciting! Tim's hair started falling out today which was very sad for me as my favourite spot to kiss is his warm head. It's weird to know that we may wake up and have a bald baby in the morning with hair all over his bed...

We had a nice time visiting our new house and putting up a swing! Grandpa Henk made it today out of a 2 x 6 and some really thick rope. Thanks Grandpa! Grandpa Alex hadn't seen the house since the framing and was quite excited to see the progress. My favourite part of the whole house is the fireplace and the cool trim but Kate's is clearly her pink room with the high ceiling.

Tomorrow it's back to the hospital. Blahhhhh...

Enjoying Home...

As many of you have pointed out, I haven't updated the blog lately. And that is only because not too much has happened recently. We are really just enjoying our time at home, awaiting the return to the hospital on Monday night. Timothy's check-ups have been going well and no blood transfusions or extra hospital visits have been necessary (for which we are truly thankful!)

I suppose we have been trying to be a bit "normal" lately, just living and playing and enjoying the gorgeous September weather. We take daily walks to the park, have tea on Grandma Jessie's porch, paint fingernails (Kate's, that is!) and practice sitting and standing and such. Tim has just began to put some weight on his feet this week which was really exciting!! I think it still hurts him a bit to stand but not as much. He is a really strong little guy!

We have a clinic visit Monday morning and then he checks in to the hospital on Monday night 8 pm and then chemo this round consists of 3 heavy-duty drugs on Tuesday. We should be home by Wednesday! It will so hard to go back now that Tim is used to being home and outside and with me all the time. Hopefully he will just be so glad to see all his "girlfriends" again that he won't mind being there!

In other news, life does go on and we are close to being finished our new house! There is a minor mishap however, as one company sold our RESERVED hardwood! How do you do that?!? Then the next place we managed to find this type of wood at mislabled their box and they actually don't have any when they said they did! Anyways, now all the scheduling for the trades is all screwed up and it looks like we will be rushed to make the closing date. Just in case we needed another challenge... Oh well... just another lesson in trusting God to take care of all the details. I'm sure we won't be out on the street...

I am still not working as I am leary of getting any "germs" that could potentially get Tim sick. So my poor dad is working all day at his office and then coming to mine to work a few hours in the evening! (Thanks so much dad! You're the greatest!) So far, no associate for my office has been found, so I would appreciate your prayers in that aspect. I also really wrecked my knee which I don't have time to deal with right now with all of Tim's health issues. So there's another prayer request for you. Good thing we have so many people out there to support us and help us out!

Well.. I guess a lot HAS happened afterall with the length of this message. Sorry it's so long! But it's been a while...

Until next time...

Shauna

A Beautiful Day

Timothy had his first clinic visit on Monday and it went well. His white blood cell levels had come up significantly and his hemoglobin was fine. So no 4-hour blood transfusion... yeah! And also no more complete isolation. Tim was okayed to go out as long as he is not around anyone who is actively sick, sneezing or coughing. We are still being careful because his levels could drop again at any time. We did, however, head off to the park today in the double buggy! (I wish I had remembered my camera!) It was my first walk outside in a month! Such a nice way to enjoy a beautiful fall day! We spent the afternoon outside playing on a blanket on the front lawn. Everything almost felt normal for a while...

We also got a call from the oncologist when we got home that the blood tests from California showed that Tim is missing the 1P chromosome (loss of heterozygocity) and is therefore required to have the 4 treatments instead of the 2. So not exactly the news we were hoping for but we can just be thankful that we live in a place where treatments are available. At least it's not 2-4 years of chemo. After the 4, they will redo the MRI and see if he needs more surgery and more chemo.

Until next time... Shauna

P.S. I couldn't get any pics of Kate without her hand in her face or her running away. I will have to be sneakier next time.

Home at Last!

So we packed our bags and off we went after a grueling day of deciding if we should go home or not before giving Timothy a blood transfusion. The nurses there think it's no big deal as they give blood daily to many patients. But when you read the risks involved, including 1/694 000 getting AIDS (!!), I would prefer to only get blood if it was really necessary. Tim's hemoglobin was borderline low in the morning so it was suggested to give him red blood cell transfusion. To make a long story short, we ended up re-checking the blood at 5:00 pm and it had gone up. So we decided to hit the road!

We arrived home at 8:45 pm and are loving being all together as a family. We all even slept in until 9:00!! Tim is neutropenic (low white blood cell count) right now so we are pretty much keeping ourselves in isolation to avoid Tim getting any infections that his body can not fight off. We will have clinic visits on Mondays and Thursdays until his next round of chemo. Please continue to pray for no illnesses in the family and that side effects would be minimal. So far, Tim's hair has not fallen out but they say he may just wake up one morning and have it all on his pillow. At least he doesn't have much to lose! It would be much more traumatic for a teenage girl. Tim's gender has been really helping him out in this whole situation as with the drugs he is on, it would likely wipe out all the eggs a female would have, leaving her infertile. But since he has not reached puberty yet, Timothy should not have any problems with fertility later in life. Main areas of concern are possible hearing loss, heart and kidney problems, and developing another cancer.

In other news, the home care nurse came to the house today to flush Tim's Broviac catheter and give him his daily dose of GCS-F which boosts the white blood cell count. Tim is looking kind of greenish but is otherwise all right! Thanks again for all your prayers and cards and phone calls! We love and appreciate you all!!

Home Tomorrow?!?

Today was a rather slow day, with Ken having to go back to work this morning and not returning until tomorrow. Very lonely and boring, watching the clock go round. Luckily, Becky came to visit tonight to liven the situation. Tim certainly remembered her and had lots of stories for her!

Timothy received his last dose of chemo today (for this round). He was pretty grumpy and feeling yucky so he ended up needing some Gravol, after which he purked up quite a bit. He is rather "puffy" from the meds. Tomorrow they will teach me how to flush his Hickman catheter at home to keep it clean and also how to give him his daily injections of GCSF, an expensive drug used to boost the white blood cell count. Tim's platelets are excellent but his RBCs are borderline so he may require a blood transfusion tomorrow before we go home. (this takes about 4 hours!) So hopefully all goes well tomorrow and we can head home to St. George!

Timothy had his second dose of chemo today and did well. He looks quite sick but is doing his best to try to be happy. When Ken saw him tonight, he said he looks like someone who has been smoking marajuana... the red half-shut eyes and sort-of dopey looking. Poor guy. All toxic from the meds. Nonetheless he is doing so well and the nurses keep mentioning how good he is being.

Today I learned what will be involved in our clinic visits twice a week, which will likely take the whole morning on Mondays and Thursdays.

A group of ladies makes quilts for the kids here and we got to pick one for Tim which was pretty cool. Bethany came to visit today, which was a nice break for me to have some (somewhat =) normal conversation and get away from the hospital a bit. Kate and my mom also came and we had a nice time together. Kate brought me a craft she made and she also did a painting here.

Some other interesting statistics I found out... neuroblastoma in kids under one happens to only 7 in a million! Crazy stuff.

Only one more day or chemo and then 24 hours of monitoring means if all goes well we should go home by Friday!!

Great News!

Today we learned some new, long-awaited details. The first and most important being that the cancer has not spread beyond the original site!! Praise God! (the MIBG showed no metastasis)

We also went over Tim's treatment plan and final diagnosis which is a stage 3 neuroblastoma in the intermediate risk category. This is very good news for Timothy. Chemotherapy began today which will consist of some very heavy duty nasty drugs which are used in this kind of cancer as it is a highly aggressive type. It will be 3 days of chemo, then the rest of the 3 week cycle off, but will require 2 check-ups each week. And there will be either 2 or 4 rounds of chemo depending on the blood work which takes 4 weeks to come back from California. So far all the histology has been favourable so hopefully this will be too and then we will only have TWO ROUNDS!!! (they orginally told us AT LEAST 6 rounds, but more like 12 months!) So wow!!! only 2 is amazing!



They also said that the 5 year survival rate for kids under one with neuroblastoma is 90-95%! Tim still has a long road ahead as they will need to monitor him the rest of his life. He will have MRIs freqently to check on the tumour. They also had a pharmacist go over all the side effects of the drugs with us which took an HOUR. Yipes. So please continue to pray that these effects will be minimal as many are quite serious and possible life threatening.



Tim had his first dose today and while he did not want to eat his solids, he is drinking well and was right back at the nurses station flirting with all his girlfriends by 6 o'clock. Heehee... what a guy. He entertains about 8 people at once with all his smiles and "stories". Anyways, I am back at the Ronald McDonald house and will likely pack it in for the night soon (yes... I am wiped by 8:30 at night) It's incredibly draining to sit around a hospital all day every day. We continue to meet neat people here and hear their stories. The nurses are all really great as well. We couldn't ask for better care.



Alrighty then... that's enough for now. Thanks again for all the prayers! Have a good night and I hope and pray that none of you will ever have to go thru this. But at least we can be thankful that we live in Ontario where the health care system is top notch and covered by OHIP!!



Cheers,

Shauna

Hi everyone! We arrived back at the hospital today after a lovely weekend at home. I didn't want Sunday to end! It was so nice to have a bit of 'normalcy'. Even got to go to my parent's today which we hadn't been to in a month!
Today we had the big MIBG test which took almost an hour and Tim had to be strapped down to the table with his arms and legs down. He did so well! The nurse said, "kids just don't do this... he's an angel!" So thanks for all the prayers because they worked! He did really well. The part where his head had to be a few centimeters from the machine was brutal as they had to hold his head so still. Here he screamed but even then he was still and that part was only 5 min, then he stopped crying.
Timothy got moved again... this time into a room shared with an anorexic girl... This is kind of a weird match and it will be difficult to listen to the doctors talking with her. I hope this goes okay.
Had a bit of a tough time today as one of the family's we have got to know lost their little 18 month old son today. He went home to be with Jesus where he will no longer have to suffer. We were so happy that the family knows the Lord and that they have accepted it. Please pray for them. Another happy note is that Winston, the little 5 year old who got hit by a pick-up truck, went home today! This is another Dutch family we got to know and will miss. He is almost back to normal after not knowing if he would even have ANY function!! His head took the impact and he was on every machine possible last week. You should have seen him today! It was so exciting! It's amazing the stories you hear here...
Anyways, tomorrow morning around 9:30 is the meeting with the doctors to discuss final diagnosis, staging, risk group and treatment plan. We will keep you posted. Thank you for all your thoughts and prayers as they are certainly helping us get thru this! Love, Shauna

Last night I talked to Shauna and got her hooked up so that she could contribute to the blog ( blogger didn't send the invite the first time) So in the posts below you can see some cute pictures and a video of little Timmy! I wish that I didn't have a cold right now so that I could go and see him!
Shauna said that today at 11:30 Tim will have his MIBG test. This is the final test that is needed to fully diagnose Tim and to give what stage of cancer it is, and what treatments there will be to come. Please pray hard this morning that the test will come back clean, with no other tumors than what they know about!
Shauna also said that the original tumor found (they didn't operate on this one, just the one by the spine) has shrunk significantly already...with no treatment, which is great!
As I talked to Shauna she sounded much more rested as they were able to spend their weekend at home as a family. She said that it was very nice just to have coffee in their livingroom, and almost made it feel like everything was just a bad dream.
But alas, this morning they head back to the hospital, for the test, and his first round of chemo should start soon after.
Please continue to pray for Tim as he starts this treatment, that he won't get too sick from it and that he won't get any colds or fevers so that he can come home for a few weeks after treatment.
Please also continue to pray for Kate, as this has been difficult for her as life as she knew it was turned upside down.
Please also pray that Shauna will soon find an associate for her chiropractic practice.
Thanks for reading and for your prayers, and please enjoy the pictures of the beautiful boy below!

Another sugery is done to insert a Broviac catheter which goes directly into the jugular vein. This the the access site through which the chemo will go. A kind of permanent IV site. This means no more pokes, which is good, but tricky to have this big thing hanging out for months which can't get wet and which he is likely to tug on.

The first time out of his room (except for tests of course...) here he is on a wagon ride! IV pole and all! A visit with Kate! She hopped right into bed with Tim and was talking with him when she then announced... " He loves me!" (all proud of herself) Then above, cute smiles from daddy and Tim.

Here is the neurosurgeon who did the 8 hour operation on Tim. Dr. Thorstein Gunnerson... from Iceland. We call him ,"The Viking". He is absolutely amazing. Very gentle bedside manner, very caring and patient. The other picture is to show how much "stuff" one little guy can be attached to. (6 IV pumps at one time!) And here is Tim still intubated after surgery.