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.
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.
posted by Lesley at 3:03 p.m.
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