Wednesday, January 18, 2006

Round 4 has started

Hi Everyone!

At Clinic on Monday Grace's counts were good enough to start Chemo however there were no beds available. As a result we spent the night at the Delta and went back in Tues. at 8am. We were fortunate enough to get a bed and we started chemo within hours of being admitted. Grace's first 2 days have been O.K. She is retaining alot of fluid this round and as a result she is very swollen. This does not seem to be uncomfortable for her, she just looks more ill then we are used to seeing her look. Grace's has only vomited once so far and is still eating minimally by mouth. Let's hope this keeps up. We are hoping to have Grace's web site up and running within the next week. I'll keep you posted.

Keep praying for our baby's good health.
Les

Friday, January 13, 2006

Mon. Jan. 16th

Hi Everyone!

Thurs. blood work showed that Grace still has not recovered well enough to start Round 4 until Monday. It's not great that her cycle has been delayed but we are thrilled to have a weekend at home. On Thurs. we did find out that her stool culture came back positive for CDiff so she has started a course of antibiotics for this while she is almost complete the antibiotics that she is currently on for her Gtube infection. These infections are unfortunate but not surprising given how agressive Grace's chemo is. Her white blood cell count drops so low that she can not even fight off her own bodies bacteria and as a result she is constantly being treated with antibiotics for something. Grace's spirits are great right now. She has been out of bed for about 10 hours a day for the last two days... This is the most she has been out of bed since her surgery in Oct. She loves being at home, surounded by her own toys and with Griffin. Unfortunately she still can't see any friends due to her comprimised immune system and her GI infection (CDiff - very contagious).

Grace's next MRI has been booked for Feb. 1 at 9:15am. This MRI is very important for us. It will tell us wether or not the 3rd "area of interest" that remained in the last MRI was malignancy or post surgical scaring. If it was malignancy we hope that it has disappeared or reduced in size. If it's post surgical scaring... that's good news too. If it's malignancy that is stagnant in size we may be looking at another surgery. We'll keep you posted.

Les

Tuesday, January 10, 2006

Round 4 Delayed

Hi Everyone!

This is my first update using my fancy new COMPAQ laptop!

We went to clinic on Thurs. to find out that Grace is still having a very hard time recovering from round 3. Her counts where still very low and are now expected to take a while to recover since as of Wed. she had received her 14th dose of GCSF (the needle she receives post chemo to help her white blood cells recover). They discontinue this very expensive med ($250 a vial) after 14 days because there is a belief that it starts to "crowd out" the recovery of red blood cells and platelets. So now it is up to Grace's body to recover without pharmaceutical assistance. Ian and I noticed that she was having some abdomen pain and although it's hard to tell if her G tube site is infected (Grace can not produce puss - indicator of infection- because her white blood cell count is too low) the doctors decided to start her on an antibiotic for G tube infections just in case. This med can be given via G tube so we did not have to be admitted and the doctor's just requested us to come back to clinic on Monday for another CBC and hopefully the start of round 4. Unfortunately Grace spiked a fever at 10pm on Friday night and we headed to Emerg. Broad Spectrum IV antibiotics were started and blood was taken to culture and we got settled into a room in the oncology "over flow" ward by 4am. Grace's fever broke on Saturday, her cultures came back negative and her course of broad spectrum IV antibiotics were complete as of Monday but the doc's wanted to keep us one more night to monitor her G tube site. This morning her site looked well enough to be treated at home and her spirits were good so we were discharged until Thurs. Thurs. we will return to clinic for CBC and possibly Grace's 4th round but we have already been warned that it is very possible that Grace will still not be ready and in that case we will aim for a 4th round start of Mon. Jan. 16th. If her white blood cell count is still struggling to recover on Thurs. the doc's may restart her GCSF. Generally Grace is in good spirits and starting to show some interest to getting out of bed. She actually sat in her high chair and ate 2tbsp of Alphagetti and 6 gold fish crackers for lunch. That is the first time she has had a meal by mouth in 2 months (very exciting). Keep our baby in your thoughts and well keep you posted.

Take good care,
Les

Tuesday, January 03, 2006

Round 4

After that very long update I forgot to mention that we are back to Sick Kids on Thurs. for a CBC in preparation for a kidney, hearing and possible round 4 of Chemo to start on Friday Jan. 6th. We may spoil ourselves with an overnight stay at the Delta on Thurs. night instead of fighting traffic home on Thurs. night to return to Sick Kids at 8am Friday morning. Keep your fingers crossed that Grace's blood counts recover enough to keep on schedule and start round 4 on Friday. If they do we will be inpatient for at least a week. We look forward to that good St. Elizabeth's cooking!!

Les

Round Three Done!

Hi Everyone!

Sorry I have taken so long to update... Life has been hectic. Where to begin??

Grace had her G tube surgery on the 12th of December and it went well. The tube began leaking on the 14th which was disappointing because that would mean another surgery for replacement. But we decided to hold off for 6 weeks since the leak was minimal and waiting 6 weeks would allow the track to establish its self and as a result the replacement could be done without use of general anesthesia. Then on the 19th while I was changing her dressing the butterfly clip that is suppose to pass via her GI track pulled out through the hole in her abdomen wall... very upsetting (painful) but Grace recovered with great strength.

On the 16th Grace had her bone marrow harvest via marrow being pulled from her hip bones using large syringes to prep a back up sample for her transplant in late Feb., early March. The surgery was suppose to be minor (1 hour with quick recovery) so I insisted that I could handle it on my own. With family at home and Ian at work I brought Grace to the O.R. and after 21/2 hours in the waiting room I broke down because I thought that the delay was because something had gone wrong with Grace. Within an hour I was joined by my Parents and Ian for comforting. Come to find out that the surgery took so long because her bone marrow has been so compromised from the high dose chemo that they had to aspirate a dozen times (6 in each hip) and even with doing so they could only get 1.6 stem cells per cc instead of their goal of 3-5. Disappointing but since it is only a back up we are still within safe parameters to move forward. I will never attempt another trip to the O.R. myself again...

Grace then started Chemo on the 17 recovering quicker than I from the bone marrow experience the previous day. She had vomiting (a couple times a day) but we were not surprised because we were simultaneously working out the details of her G Tube feeds. Grace was a complete trooper attending Physio day 3 through 5 of her cycle and we were discharged on the 23 of December (day 6 of her cycle) in hopes of spending Xmas at home.

Grace was vomiting a lot on the 24 so Ian and I brought her in to Credit Valley Hospital (a satellite oncology location for HSC) that evening for rehydration and we were discharged at 4am Xmas morning. Graces WBC was undetectable making her very prone to infection so we canceled our Xmas plans with family and Ian, Grace and I spent the day napping in the king size bed (such a wonderful change from the hospital) and Grace had the energy to open 3 gifts which was good fun.

On the 26th I noticed that Grace's energy was continuing to plummet so we took her back to CVH for a CBC (complete blood count) to find out that she needed to be transfused on both red blood cells and platelets. They were ordered from Toronto (Grace is a very rare blood type so most hospitals do not stock her type) and while we were waiting for her blood to be delivered she spiked a fever. Antibiotics were started and blood cultures were taken. After the standard 48 hours of antibiotics, negative blood cultures and 24 hours without fever we were cleared for discharge from CVH Wed. evening however Grace was due for a Chemo push on Thurs. morning. Hence we stayed the night, received the push Thurs. morning and were home by 3pm on Thurs. the 29. We then spent a wonderful New Years... again at home in the king size bed... just the 3 of us since Graces WBC were still undetectable, watching Dora and eating vegetable stick chips... absolutely perfect in our books.

On the 1st Grace woke up bleeding from the month (sign of low platelets) so we were back to CVH for platelets. When they did her CBC, her platelet count was 6 (heathy kids it's 400). With a platelet count of 6 the smallest bump could be tragic so we were admitted in order to guarantee Grace would stay inactive until her counts recovered. Tues.'s CBC showed she needed RBC again so after another transfusion we were discharged and got home last night at 8pm.

Now I'm sure you understand why I haven't had time to post a blog... life has been hectic! Poppa (my dad) is over playing with Grace so I could send this update and bath Griffin (must be done weekly to ensure he doesn't make Grace sick).

Again your generosity during this special time of year has been unbelievable. Special thanks to Sue and her friend Helena who each cut 10 inches of their hair off to donate to make wigs for children with cancer as well as fund raise for Grace. Also thank you to Alex's, Sherri's and Poppa's work who all collected money during Xmas parties for Graces fund. I have been declined for LTD so we are officially living on one income. I'm not sure how Ian finds the energy to still work but he does, he's my "godsend". Sheila... thank-you for your efforts in order to hopefully secure benefits for us will I'm off caring for Grace. What can I say... we are surrounded by wonderful people and somehow that makes this devastating time manageable.

Sincerely,
Ian, Les & Grace

P.S. HP has generously donated a lap top to Grace so that she can stay in touch (via web cam) with her grandparents and pets while she's in isolation at HSC. She has agreed to lend it to me so that I am able to more conveniently & regularly update this blogger from the hospital. Also... Alex and a good family friend Mark are creating a website for Grace. We'll let you all know the address once it is complete.