Posted by Jordyn's mother, Tracey, November 1, 2009
Jordyn the Witch says Happy Halloween to everyone! Jordyn got to do some trick o treating on Friday morning around the hospital. Thankfully she was feeling good enough to want to participate in all the Halloween activities which included some cookie decorating, movie, and partying all day. Last week she was in isolation so she was not allowed to come out of her room at all so we were very nervous that she would not be able to do any fun Halloween things but at the beginning of the week she was set free and finally able to come out of her room. That was a good day!!
Things have not been much different from my last posting, which is why I have not created another update. Unfortunately Jordyn's counts have not gone up at all which has been a huge wedge in the big picture. The problem is that we can't move forward with her next induction of chemo with no counts. But also she can not just sit forever with no counts and no chemo and no moving forward. Two weeks ago she was put on a GCSF shot daily which is basically a cell stimulant to stimulate cell growth. On this med each child is different but she should have grown some marrow by now. So moving forward together with the docs we have decided that Jordyn needs to have the bone aspiration without counts on Monday morning so the doctors can take a look at what exactly is happening. They need to determine if maybe there is an infection they are not catching and she is indeed making cells slowly which are going directly to this infection trying to fight it and maybe that is why her counts still show at 0, which would be an OK answer.
The other answer to the problem would be that Jordyn's body has been through so much since the age of 1 that her marrow is just too tired and retired from making anymore marrow on it's own, which would be the worst answer and the answer that we are so praying for it not to be.
Again, the procedure will be Monday morning so much prayers are needed and good positive energy sent her way for sure. We should know all the results to the aspiration hopefully by Tuesday afternoon/evening.
Also, since cold and flu season has arrived along with the scare of the H1N1 virus we will not be allowed anymore visitors for at least the next month but may be two. We have been limiting visitors as it is and doing a good job with it but now the hospital is in complete panic and is now enforcing that all inpatient children will not be allowed anymore visitors but parents.
We know that all of you are here in spirit! I know we keep repeating how thankful we are to have so many people pulling for Jordyn but I feel that we can't thank you enough and no words would ever truly express what is in our hearts for all of your support.
Sunday, November 1, 2009
Sunday, October 11, 2009
(Written by Jordyn's mother Tracey, from her Carepage updates)
Faith & Medicine
Posted Oct 11, 2009 7:45pm
I guess it has been too hard for me to post an update and I apologize to all of you that have been wondering how Jordyn has been doing.
No one should ever have to face the pain of cancer, much less a child who is facing the pain for the third time. Jordyn's induction phase certainly has had some bumps in the road which will NOT make us give up the hope and faith we have to beat this. One of the new chemotherapy meds that Jordyn's induction phase consisted of had a neurological effect on Jordyn in such a way that together with the docs we made the decision to stop this particular med in Jordyn's protocol. It was a scary time for all of us since the effect had given Jordyn some memory loss, slurred speech and just an all around negative effect. She underwent a mulitude of tests which just showed that yes indeed there had been some slowing of the brain. However, I must say that about a week after the medicine was discontinued Jordyn has made such an improvement with her reaction. Her memory of having a sister came back along with her speech making an amazing turn around.
The other unfortunate circumstance is that in the recent week Jordyn has been unable to finish her last chemotherapy in her induction phase because of her liver and gallbladder being quite enlarged. Her blood work shows very high enzyme levels that had the docs do some extra tests that included an ultrasound and x-ray of Jordyn's organs. Because her little body has already been through so much, this induction of high dose meds has just had an enormous impact on her.
Her counts for fighting infection still remains at 0, which is why so many have been held off from visiting. We know so many of you want to see her and are praying for her in so many different ways and that will never go forgotten. As of yesterday Jordyn has been running a high fever with her blood pressure slowing down. Her pain level we are trying to get under control with some days being better than others. We just are holding onto complete faith and hope that the blood cultures will not grow any signs of infection.
Jordyn has been such a fighter and always will be. Through all her pain and agony she will still try so hard to get up at least once or twice a day to play on the computer, color, paint, play Uno and just try to be an 8 year old girl. To sit beside her and see this child just naturally hold onto the hope of faith and medicine is more than amazing! Jordyn has completely kept us all holding onto the focus of once and for all CONQUERING this cancer.
In between day 30 and 32 of induction (about 1 week to go), Jordyn will have a bone marrow pull to check if what we have done so far has put Jordyn's cancer back into remission. We wait now for Jordyn's counts to recover so that we may start her second round of induction.
Together we all sit and be strong, we sit and be positive, we sit and be faithful because as we know nothing is impossible with God on our side.
Thanks to all who give us so much to be thankful for with all your generosity, all your prayers and support. It is abundant and very appreciated!
All together let's just naturally, like Jordyn, hold onto the hope of faith and medicine.
Faith & Medicine
Posted Oct 11, 2009 7:45pm
I guess it has been too hard for me to post an update and I apologize to all of you that have been wondering how Jordyn has been doing.
No one should ever have to face the pain of cancer, much less a child who is facing the pain for the third time. Jordyn's induction phase certainly has had some bumps in the road which will NOT make us give up the hope and faith we have to beat this. One of the new chemotherapy meds that Jordyn's induction phase consisted of had a neurological effect on Jordyn in such a way that together with the docs we made the decision to stop this particular med in Jordyn's protocol. It was a scary time for all of us since the effect had given Jordyn some memory loss, slurred speech and just an all around negative effect. She underwent a mulitude of tests which just showed that yes indeed there had been some slowing of the brain. However, I must say that about a week after the medicine was discontinued Jordyn has made such an improvement with her reaction. Her memory of having a sister came back along with her speech making an amazing turn around.
The other unfortunate circumstance is that in the recent week Jordyn has been unable to finish her last chemotherapy in her induction phase because of her liver and gallbladder being quite enlarged. Her blood work shows very high enzyme levels that had the docs do some extra tests that included an ultrasound and x-ray of Jordyn's organs. Because her little body has already been through so much, this induction of high dose meds has just had an enormous impact on her.
Her counts for fighting infection still remains at 0, which is why so many have been held off from visiting. We know so many of you want to see her and are praying for her in so many different ways and that will never go forgotten. As of yesterday Jordyn has been running a high fever with her blood pressure slowing down. Her pain level we are trying to get under control with some days being better than others. We just are holding onto complete faith and hope that the blood cultures will not grow any signs of infection.
Jordyn has been such a fighter and always will be. Through all her pain and agony she will still try so hard to get up at least once or twice a day to play on the computer, color, paint, play Uno and just try to be an 8 year old girl. To sit beside her and see this child just naturally hold onto the hope of faith and medicine is more than amazing! Jordyn has completely kept us all holding onto the focus of once and for all CONQUERING this cancer.
In between day 30 and 32 of induction (about 1 week to go), Jordyn will have a bone marrow pull to check if what we have done so far has put Jordyn's cancer back into remission. We wait now for Jordyn's counts to recover so that we may start her second round of induction.
Together we all sit and be strong, we sit and be positive, we sit and be faithful because as we know nothing is impossible with God on our side.
Thanks to all who give us so much to be thankful for with all your generosity, all your prayers and support. It is abundant and very appreciated!
All together let's just naturally, like Jordyn, hold onto the hope of faith and medicine.
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