June 6
Jacob's last cycle of Chemo is OVER...although the Chemo itself is over the effects of eight rounds are very apparent. Jacob seemed to get a little better by Tuesday and we left for Ottawa (his counts were OK his neutroploys were at 1.0), but by Wednesday morning his counts had already dropped to 0.62 which would usually mean that we were sent back to the Ronald McDonald house to wait until they reached 0.75....but becuase this was his last round they made an exception and Jacob was admitted for his last cycle. A problem arises while accessing Jacob's port...the emla cream had been on for 45min which usually freezes the area...but that was not the case. The nurse squeezes the port to steady it for the needle (3/4 inch) and plunges it into the port...at this point Jacob goes into histeria and we realize that the site must not be frozen. Because Jacob has a double port two needles must be inserted, and we hold poor Jacob down while the second needle is put in.....but the second needle does not hit the site in the right place and has to be taken out...Jacob is poked a total of four times before both his ports are working properly. By this point Jacob is covered in sweat and we find it hard to console him...
We end up on 4north by 1pm and find that we get the room to ourself (big bonus)...Jacob seems to have recovered from the mornings events after his nap and we head to the playroom. The Chemo itself goes well and is over in about 2 hours...Jacob has to hydrate for 16 hours after this Chemo and also receives Mesna to flush the kidneys and we are discharged by 1pm on Thursday. Jacob has stopped eating and is very 'gaggy' but hasn't vomitted yet, and we head back to the Ronald McDonald House to pack for tomorrows flight. By morning we notice Jacob is very shaky and weak and we try to get a little bit of strawberries into him for breakfast (he eats a little piece and that is it).. Our flight leaves at noon and all goes well...except for Jacob...he has started to get tremors and Mike and I begin to worry.
Sunday--Jacob has the worst night yet...he was awake almost every half hour shaking and grabbing me like someone stabbed him with a knife...he vomits at 5am and I wake Mike for help...we worry about what this means and hope that it is just his nerves from everything that has happened.
We will be taking Jacob for regular blood work this week at NEO and see the oncolgist here on Tuesday with our concerns...Jacob is scheduled for bone marrow on the 15th and his MRI is on the 18th in Ottawa, and for two weeks he will have various scans to evaluate the effectiveness of the last four cycles and ready him for the surgery the end of June.
June 9
Jacob has not improved since Sunday...we took him to the Cancer Center on Monday morning and he was accessed for bloodwork hoping that the tremors were caused by an electrolyte inbalance...but unfortunatly all the bloodwork came back fine. A CT scan of Jacob's head and neck are ordered to rule out a brain tumor and is scheduled for Thursday morning here in Sudbury......we don't feel as though we should wait any longer as Jacob is very lethargic and is doing nothing but crying...we call CHEO. We leave tomorrow morning on the early flight to be seen by the Oncologist in Ottawa....they are moving his MRI to Friday and he has an appointment with a Neurologist Friday afternoon....
Mike took Jacob to mass this morning through tears for a blessing of the sacrament of the sick in hopes that something will help get Jacob through this horrible time in his life....please keep praying....
We will be in Ottawa until Jacob recovers from Surgery...but will try to update the site weekly....
June 19
I wanted to start this update with a thank you.....we have been checking the website from the hospital daily and reading all of your messages in the guestbook.....this brings us such joy...your support is much needed and will be for many months to come....
Our worst fears have come true....we landed in Ottawa on June 10 and since that point I feel as though our lives have changed forever....
Jacob had his emergency MRI and CT of his head on June 12 and we saw the Neurologist in the afternoon, he diagnosed Jacob with Opsoclonus-Myoclonus (OMS). OMS is a syndrome directly related to Neuroblastoma, it affects only 2% of children at diagnosis. (please click on here to learn more about the syndrome) Basically Jacob's body is attacking his brain (a certain protein found in his tumor is also found in the brain stem). Because this syndrome affects so little children (CHEO has never seen a case such as Jacob's in their history) little is known about how long it takes for the syndrome to cause permanent brain damage. Jacob has been in testing since we got here on the 12th and will have four more tests this week before he is done. The Oncologists are worried about the possibilty that the tumor has spread somewhere else in Jacob's body because he developed OMS so late in his treatment.
Mike and I don't know how we have held on this long and feel like we are falling apart at the seams...Jacob has still been vomitting and is crying most of the time...he has trouble walking and is shaky with any sudden movement....He has had a couple 'good' days since our return, but his tremors are always apparent.
The oncologists are meeting tomorrow at the tumor board to discuss Jacob's case and review his MRI and CT results...they have told us so far that he is likely to need about six more months of treatment which involves more Chemo, steroids and another immuno-suppresent. His surgery is being moved up....and the tumor will hopefully be removed in the next couple weeks so that treatment can begin for the OMS.
I will send another update as soon as the final results are presented to us (likely the end of this week) and we will know surgery dates and treatment schedules.
We pray every night that the neuroblastoma has not spread....we are very anxious to get treatment started for the OMS and find some comfort for Jacob....
