June 28
I am writing this update from the hospital....Jacob has been in surgery for a little over 2 hours now and will hopefully be out in 4 hours.
Since my last update Jacob has been in the hospital, he started getting a high fever and was admitted a week ago Sunday. The Oncologists started him on IVIG an IV drug administered over 4 hours for two consecutive days last Tuesday to treat his OMS which to our dismay has gotten worse. Jacob has also been started on high dose Prednisone twice a day and was on antibiotics until yesterday to treat a urinary tract infection (which was the source of his fever). At the tumor board last Monday Jacobs surgery was classed as an emergency and was booked for this morning at 8am. We also got some good news...all of Jacobs tests came back negative for neuroblastoma, and thankfully the cancer has not spread.
I will hopefully have the time to update later today when Jacob comes out of surgery.....we won't know how much nerve damage he has until tomorrow (the diaphram, eye, voice box, and shoulder can be affected)....but as the surgeon told us all of this is manageable with minor surgeries later.
I know we said this in our last update but thanks again for all of your messages....it has been a source of great strength for us through this difficult week....
July 2
Sorry I couldn't get this update done faster.....Jacob's surgery went better than we could have imagined. As I wrote the last update Jacob was finished in the OR...his surgery only took two hours and Jacob has no major nerve damage. It looks as though his horners syndrome might be back....his left eye is swollen still so it is hard to tell yet. To our amazement Jacob's drain was taken out on Tuesday morning and we were released back to the Ronald McDonald House to recover. We were starting to see the light at the end of the tunnel....We have had a hard week with the OMS as we expected after the surgery and the codine (both make the OMS worse). We have a follow up appointment in the MDU on Monday morning to evaluate the effectiveness of the treatment so far for the OMS....if we don't see any improvements by then...we will be looking at a different mix of drugs and possibly some more Chemotherapy.
We are looking forward to hopefully coming home for a couple weeks on July 7th or 8th if we can get the OMS under control and get our little Jacob back....this week has been hard on both Jacob and the family....
July 13
I am sorry for the delay with news of Jacob's condition....our lives have been a mess since our last update....Jacob's condition has deteriorated with the OMS and although we managed to get home for three days last week we had to make an emergency trip to CHEO on Sunday for treatment and an MRI.
Since the Thursday following Jacob's surgery the OMS has taken over our lives. Jacob's crying spells have increased to span most of his waking time and he is now having what the doctors think to be small seizures with the spells. Jacob doesn't sleep more than an hour at a time and the tremors have robbed him of even the simple pleasure of playing with a toy.
Mike and I have been walking zombies and are finding it difficult to find hope that there is an end to Jacob's suffering. Jacob received more Chemotherapy as well as more IVIG on Monday and an MRI of his head was done yesterday to determine if there has been any permanent damage to his brain and again to look for neuroblastoma. We will hopefully get the results of the MRI by next week. If this course of treatment does not work within the next month then our next step is a drug called ACTH which is an intramuscular injection given twice a day for two weeks and then every day for 5 months (this comes with a high success rate, but has a lot of side effects and is hard to stop without the symptoms returning).
Although tired and frustrated we are happy to be home and hopefully will be for a full month before returning for more treatment in early August. The support we are getting is what gets us from one day to the next and I can't say this enough....THANK YOU....
Here is a picture of Jacob at the Ronald McDonald House a couple days after surgery....I will also add some new pictures to the gallery...
Finally I can write a 'GOOD NEWS' update....Jacob has started to show signs of improvement...for the last four days Jacob has started crawling again and is showing interest in playing with toys. Although the tremors prevent him from walking he is trying to stand up on furniture. The crying episodes have decreased to a couple a day (which is so much more manageable), and although he still does not sleep more than an hour at a time, Mike and I have gotten a break everyday with the help of our family (we are so blessed to have a supportive family). Jacob's eyes seemed to have stopped 'dancing' and he is eating everything in sight (he has gained 5 pounds in 2 weeks-thankyou prednisone!) he is still irritable and very shaky, but we seem to be able to head off episodes with car rides and long walks in the stoller. We still have a long road to recovery ahead of us, but it is these little steps forward that keep us going.
I remember back to December when Jacob was first diagnosed with Neuroblastoma, I thought then that the world had come to an end...we have learned to take things a day at a time and now with the OMS some days it is a minute at a time. Jacob is going to have a life long fight to stay in remission from neurological symptoms and with this comes many challenges....if nothing we have learned to enjoy the good times and not look back on the bad...
Jacob is due for his next treatment August 9th in which they will evaluate if he needs to start a new drug ACTH (the daily injection)...please pray that he does not need to go down this road....
