Fun at the hospital

Hi Everyone,

Thanks to Alex for setting up this blogg! Who knew sending updates could be this easy?? Grace is still doing well. Today (day 5) she cleared her last Chemo drug of her 4 day session which makes her ready for her chemo "pushes" on day 7 & 14. An MRI (to track progress) has been scheduled for Dec. 7... as you can imagine we are very anxious for these results. Dec. 8th Grace will have a "G tube" (feeding tube placed into her abdomen) to insure we are able to get proper nutrients via her gut (instead of via her veins) and Dec. 9th she will have a bone marrow aspiration from her hip to prep a back up sample to the umbilical cord blood that we stored when she was born to accommodate her stem cell transplant that is to take place at the end of session 6. So next week will be a very busy week. Grace is adjusting to hospital life well and finding lots of ways to stay entertained. She has started to take a few unassisted steps which is well in advance of when we anticipated her right leg to recover (mass was sitting on the motor skills of her right leg and it was not functional post surgery). Attached are 4 pictures of how she's keeping her self entertained in her hospital room. Enjoy.

P.S. In the "bubble picture" Grace is wearing her "Bravery Beads". This is a necklace that begins as a string upon admission to the Oncology ward. With each CAT scan, MRI, blood work, lumbar puncture etc...etc... Grace receives a bead to add to her string. As you can see, her first necklace is completed (probably close to 100 beads) in just 7 weeks. We started string two yesterday.

She's one brave little lady!

Love,
Les, Ian and Grace

Grace’s Second Round of Chemo

Grace’s second round of chemo has been much better than the first. She has only vomited once (compared to countless times in round one) so it seems as though the new combination of anti-nausea meds are working for her. She is C Diff positive again (infection of the bowels) so it seems as though this may be something she is prone to for the balance of her treatment. She is on antibiotics to fight this and will be in isolation until we get a negative read. Our biggest concern right now has been her blood pressure. It has hit levels of 168/98 (very high) and we can not seem to figure out why. She has been given Nifedipine to control this on a couple of occasions but her blood pressure has been stable for the last 12 hours so lets hope we continue on this trend. Her spirits are good and she is eating and drinking. Life’s been tough in the hospital this weekend with one of Grace’s friends suffering a cardiac arrest last night. She (Grace’s friend) is in CCU now. With how good Grace’s spirits are sometimes it’s easy to forget that she is fighting for her life. Last night was a big reminder.

Grace is strong and full of fight!! We are so proud of her.

Thanks again for all your support.

Love,
Les, Ian and Grace

Grace looking more and more like her Daddy

Today is a good day! When I left the hospital Grace was sitting in bed with her Daddy, watching her Dora video and swinging her arms from side to side doing the Dora “we did it” dance. Unfortunately our stay at home was only 37 hours last week. Grace started showing signs of Mucicitus (sores in the mouth) within 24 hours of being home, and after a rough Sunday night, we decided to head back into Sick Kids Monday morning. We were only there 2 hours before her fever spiked and her blood work showed that she was Neutapenic (low white blood cell count). It seems as though her fever was the result of being C Diff positive (a bacterial infection of the bowels) and not a blood infection (good news). Throughout this week she has been on antibiotics while her blood counts (red, white and platelets recover). She was well enough yesterday to get a scheduled chemo push and has been doing very well ever since. We will most likely remain in the hospital due to the C Diff, mouth sores, fever and low blood counts until she starts round two this Sunday. Again… thanks for all your prayers, good wishes, toys, pj’s and meals. Your support makes us strong.

We hope to be home maybe for a few days last week of Nov. first week of Dec. but because Grace’s chemo is so aggressive, the side effects that she has encountered this round may be a challenge with each of her upcoming rounds. If that’s the case… we maybe in over Christmas (but we’ve been told Christmas at Sick Kids is not too bad).

Les

Grace’s MRI/MEG

Hi Everyone,

As you can imagine life is crazy and phone calls tend to lead to tears. Good news… we are home!! Not everyone is in the loop so let me back track. Grace’s MRI/MEG did not go as planed on Oct. 12. They discovered that they had misdiagnosed Grace and her tumor was not benign but malignant and had grown to 10x its size in 4 months. As a result she had an emergency resection within 36 hours and we have been at Sick Kids for the last 24 days. The first 2 weeks we where in Neurosurgery where after a successful resection (99.5% removed) we were faced with poor biopsy results and excessive fluid on the brain requiring a second surgery to insert a shunt. Grace’s high dose Chemo followed a 3rd surgery to insert a Central Line last week. We have now completed her first of 6 rounds of chemo. The first 2 days of Chemo were very hard since Grace did not respond to the standard anti-nausea meds used. However, things have improved and we will be at home for the next 5 days with a nurse visiting daily for Central Line care as well as injections. Sick Kids has arranged for Grace’s “every other day” blood work to be preformed at Credit Valley so it will save us a bit of a drive. On Friday we return to Sick Kids for an out-patient chemo and then back on Sunday/Monday (depending on blood counts) for the start of round 2 as an inpatient again. Each of her first 5 cycles will last aprox a month (depending on if she gets an infection, fever etc. which would push every thing off) and then for her 6th session we will be inpatients for several weeks since it is followed with a stem cell transplant. Grace is doing well right now. Very tired and irritable and on tons of meds (over $1000 worth a week… thank god for a good drug plan) but we are hoping she settles and benefits from being at home (no 4am blood work of vitals every two hours (even through the night) as per the hospital). Due to Grace’s high dose chemo she will be isolated to our home when not at the hospital and as much as we would like to see you all, we can not have her in contact with anyone during this critical time (to decrease the chance of infection). Thank you all VERY MUCH for your prayers, good wishes and Grace now owns more Dora stuff than Toys R Us. Every last toy has been put to good use… helping her get through many tests without sedation (which is usually standard for her age). The additional knit blankets where a god send while she was vomiting since the hospital did not have a washer and dryer for us to use and Grace would not settle with out a “blankee”. The meals that were sent really helped since we would often find ourselves far too busy to run down to the Cafeteria to grab something (and after a couple of days of Caf food… simply lacking the motivation to do so). I will try to call when I get free moments. Keep our little lady in your prayers.

Take good care,
Les