Big Beautiful dimples :)

Shania got a MIBG scan done yesterday morning and Dr Baruchel stopped by and said that he can't see any cancer spots on Shania's lungs but we will have to wait until the biopsy comes back to be sure. He does see a hot spot as he puts it, which is showing cancer on her hip/lower back which we already know about. A physio therapist also stopped by in the morning to help Shania with her stretching and exercising, because she has been bed ridden for a while now and can barely walk from all her tendons tightening up. At two thirty Shania went down to the second floor to have a biopsy taken from the spots on her lungs. As the Doctors explained this procedure can be somewhat dangerous because her platlets are so low that she could bleed excessively. Shania was quite fine up until they had to explain all of the dangers involved in this procedure before we signed the consent forms. Our hearts were heavy watching her going off to the O.R. again. As of last night Shania was doing very well from the procedure, no bleeding from the four samples that they took as far as they could tell on the xrays. So we just wait until Friday for the results of what these spots are. We have been seeing those big beautiful dimples again since she had the radiation treatment. Its definitely a sight that we have been hoping for. That long trip down through the tunnel under University st. that links Princess Margret Hospital to Sick Children's Hospital was well worth it. Even though the radiation doses do permanent damage by stunting the growth of the bones in that area. I just wish with all of my heart that Shania's dream will come true, so that no other children have to suffer like this!Dr Ruth stopped by again yesterday and I got to hear The song that Shania had written. Shania sang it and played the xylophone And Dr Ruth played the guitar. I asked Shania if we could put it on the blog and she thought that it was a good idea so here it is:

I love you Forever
You and me, me and you together forever.
With love that is true I love you forever
and ever. You are my mommy, my
mommy forever. You and me , me
and you together forever, with
love that is true me and
you together
forever.

Wow ! talk about having a knot in my throat and tears in my eyes. After all that she has been through, and to listen to our beautiful little girl sing this song to her mommy WOW!!!!!!!!!
With love that is true,
Sincerely,
Shayne,Karen,Shania&Shannon.

I will love you forever

Shania had radiation on Friday to slow the progress of a tumour and alleviate the severe pain that she is getting from it. This tumour is on her spine right at the pelvis area and is squashed up against a bundle of nerves. She has been bed ridden for two weeks up until this point on her one side, not being able to move without excruciating pain even with the three different types of strong pain medication that she was on. The Doctors and nurses say that she is a very strong spirited little girl and she definitely needed it to get through all of the tests and scans that she had in the last two weeks, on top of everything else that is going on with her leading up to this radiation. After Shania got the radiation it seemed that she slept much better that night, and on Saturday she was able to move around and even was able to lie on her other side, which was in so much pain before that. Karen, Shannon and I were so glad that the radiation worked because it is so heartbreaking to seeing her in so much pain and you can't do anything to make it better. Sunday Shania was up to having visitors, and her Aunt Bonnie and Uncle Billy (as she calls him) stopped by with her Nanna and Grampa coombs. Her Aunt and Uncle are out from Newbrunswick visiting and it was great timing for Shania that they stopped by. Also Grandma, Grandpa Johnston and Auntie Dan Dan(My sister) popped in for a visit. Shania was very happy to see them all. Shania and Shannon got lots of pictures of everyone thanks to a very thoughtful gift of a camera from Syd Birrell and the Londons, a family from New York City, whose Four year old daughter Penelope has Neuroblastoma also. Thanks again this definitely lifted our spirits when we needed it most. Shania slept very soundly Sunday night which is what she needs after all that she has been through. Dr Baruchel talked to us yesterday, and said that the CTscan showed that the spots on her lungs have gotten larger, so they want to do a Bi-opsy on Wednesday to find out what these spots are. They did a ultra sound and say that there are a couple of spots that they should be able to get at with a needle. Shania's blood work started to en-graft on Sunday with her White blood cells, Polies and Hemoglobin counts all coming up. Only her Platelets went down but they always seem to be the last ones to come up. The Pain Team as they call them, took her off of the Morphine and ketamine pain medications yesterday, so they were able to remove most of the probes and monitors also. which is another positive for Shania. Karen and Shania went for a walk yesterday, albeit that Shania was in a wheel chair, it is great to see that she is out of bed again.
Dr Ruth (music therapist) stopped by Thursday. Earlier in the week she had asked Shania if she would like to write a song. Shania thought that this was a great idea and wanted to write it for Karen as a surprise. So when Dr Ruth came back on Thursday, Shania had already written her song and they did a rehearsal. Then they called Karen in and played it for her. And this is the title "I will love you forever". Dr Ruth says that she can record Shania and her, and put it on a CD for us. Karen said that she was very touched by this song. I will ask Shania if she minds if we put the rest of the song on the blog.
I do believe in Shania I do I do!
I do believe in Shania I do I do!!
I do believe in Shania I do I do!!!
Sincerely,
Shayne,Karen,Shania&Shannon.

Special helper

Shania is going for radiation today to help reduce some of her pain in the tail bone. She went for a bone scan yesterday and Dr Baruchel said that they found that she has a lesion or tumour where your nerves bundle together at the base of your spine, and this is why she is in excruciating pain most of the time, it 's called Neuropathic pain. Which is as he explains is like having a tooth ache and multiplying that by one thousand!! And no matter how much pain medication they could give, it would never be able to rid her of this pain. She hasn't had a fever for six day's now, so they are hoping that this fungal infection is gone or under control, they will be able to tell more after her CTscan that they are going to give Shania before the radiation treatment. Also her central line came back negative for infection, so this is more good news. They have taken her off of a couple of anti- biotics. The bone marrow aspirate shows no sign of Neuroblastoma in her bone marrow and we will find out about the bone bi-opsy today. this is significant because if it's not in her bone marrow it's not the cancer that is knocking out her marrow and is the dosage of the chemo that did. Which is huge because they would have been very limited as to how they would be able to treat her cancer i.e. no more chemo. The bone marrow aspirate also showed signs of her bone marrow starting to re-generate. Karen said that her white blood cells are up slightly today but her hemoglobin is down and they will have to give a transfusion for that. but in general we are finally seeing something positive coming about with her health. Dr Ruth came by the other day, she does music therapy with the children here at sick children's hospital and it seemed to give Shania a reprieve from the onslaught of the pain, she had all kinds of instruments that Shania enjoyed playing and boy can Dr Ruth play guitar and sing. Shania missed her on Wednesday because she was getting a scan done and she was disappointed about that, music can be a very relaxing and therapeutic way to control pain and stress. Shannon has been very worried about her big sister, she comes to the hospital every couple of days and has seen what Shania is going through. The one day this week she told Shania that she had said to Ms Long(Shannon's teacher) that she wanted Shania's name on the board instead of hers for "teachers special helper". I remember back to when Shania was in kindergarten and how much it meant to be the special helper for the day, this was a very touching thing that Shannon did for Shania, it just shows the love and bond that they have together.
Sincerely
Shayne,Karen,Shania and Shannon.

This time last year

Last Wednesday it was one year ago that Shania first started showing signs that she had Neuroblastoma. At first we thought that she was getting the flu because she had head aches and threw up, but she didn't have a fever. So we took her to the doctors and at the time they thought that she was getting migraines, but they weren't going away. and by the time this long weekend came around we were getting very worried what was going on. When we had the fire works the noise and bright lights were frightening her. which was unusual because she loves watching fireworks every year. They had her get a CTscan but this showed nothing unusual, so our family Doctor set up an appointment to see a migraine specialist but this was not to be, because Shania ended up at Sick Children's Hospital with these severe headaches that weren't going away. They did more tests on her and another CTscan, but still couldn't find anything wrong with her.They said that if we noticed any other symptoms to bring her back. This was very concerning to us because she was having these headaches at night also and would wake up in severe pain. We just had this parents gut feeling that something wasn't right. We ended up back at Sick Children's Hospital again when Shania ended up having stoke like symptoms. This time they did the CTscan with the dye and found Three tumours on the inside of her scull, which were putting pressure on a major artery in her brain. And not long after that we got the news that Shania had this cancer that we had never heard of before. This week and Weekend has brought back a lot of memories of those first heart wrenching days of finding out that our Shania had this devastating disease.
Shania got her bone marrow back up from her Bone Marrow Transplant on Wednesday night to hopefully reboot her body into producing blood again. This can take up to Twelve days to en graft again. It is like her getting a bone marrow transplant minus the massive dose of chemo. Dr Baruchel thinks that the combination of her relapsing so soon after the transplant and having the shingles, that this could be why this last chemo wiped out her bone marrow. Friday night Shania's pain gradually got worse so they decided to switch her over to a self administered pump for morphine, which she can push a button when she feels she needs more pain relief. The highest Shania had gotten on the pain scale from one to ten was eleven up until this point. But by the time it was hooked up Shania had reached a twenty five on this scale. It is not easy to see your child going threw this much pain and you can't take the hurt away. The Doctors are trying to figure out why she is still getting pain surges that are still coming back even with this new type of pump. She hasn't had a fever since Saturday night so hopefully this is a sign that the anti-Fungal and anti -Biotics are working. they are going to do more tests and scans this week to find out how things are going. Karen said that last night Shania asked if she is going to die???? (Oh my!!!!!!!)Karen told Shania the truth, that everyone is doing everything possible to make sure that this does not happen. We are all working as a team to make her get better. We think that this Question has been weighing heavily on her mind since the re laps, and are glad that she wants to talk about what is on her mind. I remember back to when Shania was around two-three years old and she found out that people die, she was so upset, she asked if Karen and I would die, we said that we weren't going to die for a long time and that this was part life. But just seeing that innocent sorrow that people have to die someday, I won't ever forget it. This is the caring, loving, and compassionate girl Shania's has always been.
I do believe in Shania I do I do!!!!
Sincerely,
Shayne,Karen,Shania&Shannon.

Loves first glow

Shania likes to fall asleep at night to this CD called Sunday Morning Classics "Loves first glow"it is a classical mix of Chopin,Mozart,Bach,Tchaikovsky,Brahms,Beethoven ect... Shania has been listening to this to fall asleep since she came home from the hospital for the first time last year. She was having a hard time falling to sleep and asked if she could listen to some ballerina music and this is the one that she liked from our collection of CD's. I couldn't sleep(bad dreams) and am listening to this CD right now, it has very soft soothing melodies and I can understand why she would want to fall asleep to it. On the cover it says "a quiet time to reflect on the preciousness and joy of your life". And that is just what I have been doing. I have so much to be thankful for, a Beautiful wife that I am so blessed to have in my life. I can't imagine my life without her, I have loved Karen from the first time that I met her and always will, no matter what happens in our lives, she is my soul mate for life. Also I am so thankful that Karen and I were able to have these two wonderful daughters together. I used to say that I never wanted to have kids and now I could not even fathom my life without them. They have taught me so much about life and how it is meant to be lived. Shania was our first daughter to open up this new and incredible world of parenthood to me, and I haven't regretted one moment of it. Shannon just added to this joy when she was born. I am as proud as a father can be to have them in my life.
Tuesday night we found out that Shania has spots on her lungs, which they suspect is a fungal infection. To treat this they have added another Anti-fungal drug to the growing number of meds shes on right now. They can't take a biopsy because of the position it is in her lungs. Yesterday we got some more bad news that she also has a infection in her central line(which is the line they give her all of the IV drugs,this goes into a major artery in her neck) she is on three strong anti-biotics for this and any other possible infections. Dr Baruchel talked to us about possible using Shania's back up stem cells that they have banked from her bone marrow transplant, to reboot her blood system. They want to do this because her blood work is not coming back from her chemo treatment, and they are worried that her body will not be able to fight off these infections. Shania's pain seemed to have moved to her tail bone also yesterday. Dr Barrera the clinical/health Psychologist came Tuesday afternoon and talked with Shania. She let Shania know that it is normal to have all of these feelings, and that it's good to talk about what she is going through. Dr Barrera has a very kind and soothing manner about herself, and we are glad that she came by to help Shania cope with what she is going through, she said she would come back on Friday to talk some more. Shania asked me Tuesday if we could go to see the play The Phantom of the Opera when she gets out of the hospital. I will goe to see if I can find a DVD of it for her to watch in the hospital for now. Some people have been asking if there is a bank account somewhere where they can donate to Shania's fundraising efforts, which go to The James Fund for Neuroblastoma Research at Sick Children's Hospital. We opened an account for Shania's Fun Fair at TD Canada trust under the name "Shania's Sunflower of Hope" and if wished we can get tax receipts issued just E-mail us at Shania.com@rogers.com
Thank you everyone for your continued support of our family.
Sincerely,
Shayne,Karen,Shania&Shannon.

Meagan's wonderful walk on Mothers day

Shania got a room Thursday night and her health has gradually declined since then she was having extreme pain in her left leg and the doctors are going to do a Bone Scan to see if they can find a reason why. Karen and I don't want to jump to any conclusions but we suspect that it is the cancer that is causing all of this pain. She has lost more weight and and is now on TPN(Total Parenteral Nutrition ) which is feeding her by IV. A GI specialist is coming today(digestive track specialist) to consult with the Doctors to see if she has some kind of infection in her esophagus or stomach, they are giving her Zantac for a possible stomach problem and hopefully we will get some answers as to why she still is having trouble with this mucositis and can't eat without her food getting stuck every time she tries to eat food. Dr Baruchel is personally calling a child Psychologist to come and help Shania cope with everything that is going on, she is feeling very frustrated and angry with everything that is happening with her write now. One of the things that she was frustrated about was that she didn't get to do the Meagan's walk which was on Mother's Day. Karen and her had watched a show on Meagan's walk while Shania was in isolation having her Bone Marrow transplant. They were both very touched by her story and the walk that they have in her honour to raise awareness and funds for pediatric brain tumour research at Sick Children's Hospital. Unfortunately Shania right now can't even get out of bed and Karen has a pinched nerve in her Shoulder since last week, which is giving her severe pain right down her whole arm. Shania said that she wished she could have gone even in a wheel chair but unfortunately she isn't well enough for that. I asked Karen and Shania if Shannon and I could go in there place and if they could sponsor us for it. Which was the next best thing to them actually going. So Saturday night my sister Danielle came down to Sick Children's Hospital and had a sleep over with Shania, so that Karen could drop Shannon and I off at Ontario Place where Meagan's Walk begins. Shannon Brought her little pink Barbie Scooter with her. With big hugs and kisses off Shan and I went. They have the registration under the big orange tent there and it was a busy place lots of music, food and drinks. They gave us a t-shirt once we got registered and as we were walking around enjoying the atmosphere of all these happy people here for a great cause, we met up with a friend LeeAnne Curtis whose five year old son Cyle also has Neuroblastoma Stage four, next we met up with friends Mark and Julia Wickwire and there two wonderful children Laura and Michael. They asked Shannon and I if we would like to join there group, which was representing Denlow Public School . Julia is Friends with and also went to school with Denise whom is Meagans mother. So it was with great honour that Shannon and I joined this group of fine people. What a beautiful day it turned out to be for this great event, Shan scootered and walked the whole five K route only stopping once for some sunchips to refuel herself. At one point along the route we past a group of people that were all hugging each other and crying in fond memory of someone who had past away from cancer. It was hard not to think of our Shania at this point and I must say that I shed some tears also, I tried not to get to upset for fear of upsetting Shannon on this most Worthy walk. Once we got to the Hospital we went to the side that Shania's room is on. We called up to Karen and Shania so we could waive to them from the street, Karen and Our friend Hiedi waived down to us, Shania wasn't able to get out of bed unfortunately. Next Shannon and I were joined by my Father and stepmother sandra whom were also there visiting Shania, we joined hands with everyone to form a circle around the hospital and give it the biggest hug imaginable, after that we said our good bye's to my Dad and Sandra and took a walk around in all of the festivities going on, and met up with Sarah Legault from Sickkids Foundation, she was helping in the running of this great cause meagans walk, she also helps run the James fund where we first met her and she helped us with Shania's fun fair. Sarah has been a great support to our family, Shania and Shannon are quite fond of her and once Shannon spotted her she ran up and gave her a big hug and kiss. Sickkids is lucky to have such fine individuals as Sarah working for them. She walked with us around the hospital and we happened upon a bucket of chalk, Shans eyes just lit up and she wanted to write something on the sidewalk along with the hundreds of other things that other people had written and the first thing she wrote was Shania, Oh boy ! my eyes started to well up once again. Then she wrote Mommy, Daddy and finally Shannon. After that Sarah walked us to the elevators and we went up to see Shania and Karen. I would have to say that Megagan's walk is an truly uplifting experience and we look forward to doing it as a whole family together. this is there web site if you are interested in joining us next year. http://www.meaganswalk.com/ Shania and Shannon's Aunt Sandy is down visiting from Nova Scotia. She stopped by to see Shania at the hospital on Sunday along with my cousin Doug, she has just recently found out that the cancer in her liver has spread to her bone and bone marrow and she wanted to visit family and friends out here before she starts her next round of chemo treatments. My Aunt, her friend Carol and my cousin Robs girl friend Cathy drove from out east for this visit. I can only try to guess how much pain she must be in, and then to drive that distance to see friends and family, talk about true grit, now I can see were Shania gets it from it's in her blood. Thank you Aunt Sandy for stopping by you are truly inspirational and we love you deeply. I just talked to Karen and she Say's that Shania is in a little better spirits today, she was just about to go down for a Cat scan. I am going to pick up her Friend Jacklyn up from School to take her for a visit and Karen will bring her back, we hope that this will cheer her up a bit more.
With love sincerely,
Shayne,Karen,Shania&Shannon.

$35,000.00 and still counting :)

Shania's Sunflower of Hope Fun Fair has raised $35,000.00 so far and we still are adding on more because of Schools like Edward T. Crowle P.S. and William Armstong P.S. whom still want to add to this total for the Fun Fair. It is very heart warming to see that there are so many kind hearted people that want to support Shania and her cause to find a cure. Shania got a fever Tuesday and went to Sick Children's Hospital to get her blood work checked, they found that she has low white blood cell counts and that her platelets are getting low also. So they put her on Antibiotic by IV just in case she has an infection. One of the problems is that they don't have any rooms available on the eighth floor, so we have been in Emerg since Tuesday and don't know when she'll get a room. Shania is getting the mouth lesions again and the mucositis is also worsening, so she can't swallow solid foods right now. Michelle a child life volunteer ask Shania if she would like to make a wish to go into space. An Astronaut whom happens to be a Doctor is asking kids at Sick Children's hospital to make a wish and he is going to take there wishes into space with him. And Shania's wish was to fly like Peter Pan :)
I do believe I do I do
With love sincerely
Shayne,Karen,Shania&Shannon.

So excited!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Shania was so excited about the Fun Fair and had such a great time, that she has already started drawing up the plans for the second Fun Fair. This time she would like to have a Ferris Wheel ride, which is what seems to be what most people think of a Fun Fair as having, considering that almost all of the colouring contest pictures had one on them. It is great for us to see that Shania is setting a goal to be there for next years Fun Fair. Shania started her chemo on Tuesday and almost immediately started to feel less pain from the Neuroblastoma right away. We are hoping that this is a good sign, and it just keeps going this way. She is up and walking around with little pain and is eating much better now, which we hope will give her some of her strength back. Shania was well enough to go to the York Regions School Boards Celebrating Students Success Awards dinner. Karen and I were her guests and Shannon was Principal Janet Porters guest. We didn't even know anything about this award until we found out that Shania had won it, and that Janet had nominated Shania for this award. They video taped an interview of Janet and Shania for this award ceremony, and Karen and I got to watch it for the first time. It was very touching to here Mrs porters kind words about our daughter and to here Shania talking about helping find a cure for this cancer, so that no other children will have to go through what she is going through ever again. They showed Shania playing with Shannon in her room, and then Shania gave Shannon the biggest hug cheek to cheek, very touching!!! Thank you Janet again, you are an incredible Principal. Shania started to get a severe stomach pains from the chemo near the end of the night and we had to leave before it was over but we were glad that Shania was able to make it out for this Award ceremony. I have to go now, Shania has to go down for her Final day of this round of chemo.
with love Sincerely,
Shayne,Karen,Shania&Shannon.

Hope

(Hope: to expect or look forward to, with desire and confidence.) This word is such a huge part of this horrible disease called Neuroblastoma. Hope for a cure or even to improve the odds for these children. Thank you for supporting Shania's Sunflower of Hope Fun Fair and raising money for the James Fund for Neuroblastoma Research at Sick Children's Hospital. We got the devastating news Thursday afternoon about Shania's re laps. I cannot even begin to explain what it feels like to find out that your child's cancer has come back, especially when the odds are so against them before a re laps. So it was with heavy hearts that Karen and I were going to Shania's Fun Fair. We weren't even sure if she was going to be able to make it, she had a fever Friday night but it went back down after that. Shania has been in an considerable amount of pain since Wednesday and has been getting morphine for it. But we told Dr Baruchel how important this Fun Fair was to Shania and how determined she is to go. He said he would do everything he could to make sure she wouldn't miss it. Karen and Shania got a day pass Saturday morning at 10:30 AM and when they were pulling into the parking lot Shania said "Mommy look at all the cars". What a feeling it was for me to see them pulling up at the Fair Grounds. Our hearts were lifted to see her having so much fun and to see the outpouring of love and support for this incredible girl and her cause. This Fun Fair and it's timing was the best thing possible for our family, because it gave us hope. Hope for our Shania and other children with this deadly disease. Shania started her chemo tonight and seems to be having no adverse reactions so far, hopefully it will do what it is supposed to do and give her a reprieve from the pain and the onslaught of this cancer. On Monday when I got to the hospital she told me that she had a dream while she was sleeping Sunday night it was that she was flying like a fairy from the movie Peter Pan, and all of her friends from School were with her. Wow! I started to well up when she told me about this dream. Shania has won a York Region Board of Education Student Achievement Award and the ceremony is tomorrow night, but we are not sure if she will be able to attend. But if I know Shania she will do her darnedest to get there.
I do believe in Shania I do I do!
I do believe in Shania I do I do!!
I do believe in Shania I do I do!!!
Sincerely,
Shayne,Karen,Shania&Shannon.