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.

Here is the video of Timothy's first physio session. He does his exercises daily and we notice a huge improvement each time in how much he is able to do. He is getting better at sitting on his own now and reaching toys. He can almost roll over, but is still not able to stand like he used to. He is getting a brace made to keep his right foot flexed and toes uncurled. Can you imagine an adult having such major surgery and doing exercises a few days later?! Kids are incredible! (By the way, Tim's favourite past time while in the hospital is flirting with all the pretty nurses. He is everyone's favourite patient as he is always smiling. Even the cleaning ladies come in to talk to him and get a smile!)

Here we are with Timothy ready to head into

his 8 hour operation where the neurosurgeon

basically took out as much of the tumour as he could cell be cell under a microscope. God gave us an amazing sense of peace as Tim was rolled away. He fell asleep and was so peaceful... we just knew everything would be okay. (Here we hadn't slept in 2 days)

So many kisses for Timothy, so precious...

Eric talked to Ken today(Friday). Tim has received his isotopes, and now they wait for them to go through his body. I guess what happens, is that the isotopes sticks to cancer cells and when they scan him, it will kinda make whatever is cancer 'glow', and then they will be able to see if it is anywhere else! I think they have to wait 48 hours, so that's when the test will be!
Please pray that the test comes back with no more cancer then the tumor that they already know about

Well, I'm finally able to update again. Sorry that it has taken so long!
On Thursday we got a message saying that Tim had a CT scan, and it came back clear. He also had a bone scan which also came back clear. The preliminary tests are showing cancer, so Tim will have to have chemotherapy. On Thursday Tim had surgery to get a central line put in for his chemo. The type of cancer that he has is neuroblastoma.
Over the weekend they got a day pass for Tim and took him home so that they could spend the day with Kate. He was being pretty happy over the weekend.
I spoke to Shauna this morning. and she said that yesterday was a really frustrating day for them. They are waiting for another test before they can start the chemotherapy, and this test requires isotopes. I guess the hospital forgot to order them, so they have to wait, and chemotherapy had to be postponed a week, or else he would have started yesterday. Without this test there is still no final diagnosis as to which stage the cancer is. Shauna has noticed that Tim is starting to get a little unstable sitting again, so they may have to start chemo before this test if it gets any worse. If this final test comes back clear, then Tim may only have to have 2 rounds of chemo. But that is the best case scenario. He could have to have 4 - 12 rounds and possibly more surgery. They will know better after this test.
Today Tim will go for an Audiology test. This will serve as a baseline test to monitor him throughout his treatment. He had a cardiology test already.
This week Ken and Shauna took Tim to frosh week at MAC, they had a good laugh over people dressed up and racing beds.....she said that it was a good break for them.
Shauna is also very thankful for the Ronald Macdonald house. She says that they are very well taken care of there. Different families and restaurant provide yummy suppers there for them every week night.

Please continue to pray for them!

Shauna put in a few special requests today:
- to be with them on this rollarcoaster ride. There are a lot of ups and downs, and the down days are especially hard on them. She says they feel like they are living someone else's life. Others that they have met at the Ronald MacDonald house have told them that this will be their new normal for a while.
- please pray that a good associate may be found quickly to cover Shauna's chiropractic practice, as this is a huge burden for her to worry about her patients and who is caring for them.

Ken and Shauna are thankful for all the prayers and support that they are getting! If Shauna gets home in the next few days (she's only been home once in the last 2 weeks) she hopes to send me some pictures and videos of Tim to post.