March 1-After the weekend with trips to the EMERG department at CHEO (Jacob picked up a virus at the hospital and developed severe diahhrea and vomiting with a fever) we arrive at the Imaging Department for our first injection for the bone scan. They decide that Jacob is too sick to have the test done and we are sent up to the MDU to be seen by the doctor and have more blood work taken. Jacob is again neutropenic, but all other counts remain OK. Because Jacob is still well hydrated we are sent back to the Ronald McDonald House, and the test is rescheduled for the next day.
March 2-We arrive at the imaging department at 0830 for his injection for the bone scan. We are overjoyed to hear that Jacob had 'grown' some veins over the last 3 months and the technician finds a vein right away and Jacob only cries for a couple seconds....we then move up to the MDU for our 2 hour wait which seems like weeks because Jacob is NPO (can not eat) at 1030 Jacob is sedated for the bone scan (which never goes well as the stuff tastes hot and spicy) and Jacob is asleep in 5 minutes (a record I think). The scan goes well and the injection for the MIBG scan is done while he is still sedated and Jacob doesn't even flinch.....
March 3-We arrive in the MDU at 1000 for Jacob's sedation for the MIBG scan (this looks at the soft tissue in Jacob's body) and Jacob grows very irritable (he is NPO again). Jacob is asleep again after a fight to get the sedation into him and the scan goes well. Jacob sleeps for 2 hours after the sedation today....and we get a little break.
March 4-We arrive at the MDU at 1000 again for the second leg of the MIBG scan and Jacob is sedated...but this time he vomits the sedation up and has to drink a second syringe. The scan goes well and Jacob is so groggy after todays scan we had trouble getting dinner into him.
March 5-We start to notice Jacob getting weak as he tries to walk and tumbles to the floor in agony.....the daily injections give him bone pain and with a week on just breast milk and very little solids his strength is lost. We feel helpless......
March 7-Jacob wakes up this morning and his eyes look as though they are bleeding....I check him over for petechiae and notice some in his mouth and legs....we head over the the emerg department at CHEO for blood work. Jacob's platelets come back at 16 and he is prepped for a transfusion. Jacob receives two units of platelets and after spending the day in emerg we head back to the Ronald McDonald House where we get word that Joshua has developed a bladder infection and has been put on antibiotics. At bath time I start to undress Jacob and notice blood on his shirt.......his port-a-cath is still bleeding from that afternoon, I re-dress the site with a band-aid in hopes that it will clot and Mike calls the emerg department. The bleeding finally stops and we are to go to the MDU for blood work in the morning.
March 8-We arrive at the MDU for blood work and Jacob's platelets are at 34 and we are relieved. We head back to the house to give Jacob a nap before a hearing test scheduled for the afternoon. We receive a call from the MDU just as we are leaving and they need to re-access Jacob's port for another blood culture (they had taken one in the emerg department and the results came back inconclusive). The hearing test is done quickly and Jacob does a great job, and we head up to the MDU for his blood culture.
March 9-We arrive at the MRI department for Jacobs third MRI. The nurse looks at Jacob's port and does not feel comfortable accessing a double port and the IV team is brought in....by this point Jacob is having a total breakdown and the anesthetist makes a decision to pre-sedate him to relax him. Once Jacob is relaxed (he is smiling at just about anything now!) we carry him over to the MRI bed where they put the mask on him to put him under a general anesthetic (I found this very hard to watch)....he cried for about 30 seconds and then was out.....once asleep they started an IV and his MRI was started. The MRI took just over an hour and Jacob was happy to see us and eat when he woke up.
March 10-We have a 'Joshua day' to help make Joshua feel special....we celebrate with another family at the Ronald McDonald House who have three children and are in a similar situation. We are thankfull they are at the house. It has been really nice to talk to someone going throught the same thing that you are...
March 11-We arrive at the MDU for Jacob's Bone Marrow aspirate and Mike and I are quite nervous....the first one Jacob had he was under a general anesthetic. At noon they take Jacob into the treatment room and he is given a conscious sedation (a milky substance given through the IV--they tell us that Jacob will move around a little but that he will not remember anything) and I am allowed to stay and watch the procedure. Becuase Jacob's bones are still green (soft) they have trouble getting the bone marrow and have to go in four times. I couldn't bring myself to watch the procedure up close but was glad to be in the room. When they actually take the bone marrow it sounds like bones crunching together and the force they have to use to get through the bone is amazing....you can see Jacobs little toes going throughout the procedure but he remains asleep. Jacob recovers well and we keep him on Tylenol for a couple days to relieve any pain he might get in his lower back (they take the bone marrow through his pelvic bones in his back).
March 13-BIG Party our isolation is OVER---I must admit we were all ready to kill each other at the end of this!! Jacob is overjoyed to actually go outside the room and play with the other kids and toys in the house....as are we....The injection works and Jacob never develops the Chicken Pox...
March 17-the last test-the ECHO (heart function test) is completed. Jacob had to be given a double dose of sedation and we have trouble waking him even to breastfeed, until the next morning. We also had our meeting with the doctor today to discuss the results of the MRI and what course of action they will be taking with Jacob's treatment. We don't get the news we were looking for....Jacob's tumor had decreased in size from 41 to between 8-10ml, but it is still 7.5cm long and is wrapped around all of the major nerves in the neck including the diaphragm, voice box and facial nerves. At this point he still has a 50% chance of major nerve damage if the surgery was done. Because of this risk Jacob will undergo the remaining 4 cycles of Chemotherapy in hopes that the tumor shrinks away from the nerves. When the next four cycles are complete he will be rescanned and if the tumor has not moved away from the nerves, a biopsy will be done. If the biopsy results in active neuroblastoma cells being present the surgery will have to be done regardless of the risk....but if there are no active cells and the tumor has matured then the doctors will leave the tumor in and monitor Jacob closely. (the surgery would be less risky when Jacob is older)
March 19-We arrive at the MDU for Jacob's pre-admission blood work.....Jacob's counts did not recover well this time and the 5th cycle was pushed ahead a couple of days. His counts are just above what we need and we are admitted to 4 north for his 5th cycle. Jacob tolerates this cycle well, although he stops eating after the first day his appetite returns in only 4 days. We are discharged on the 21st and we spend monday trying to pack for the return home on Tuesday.
March 23-We thought we wouldn't make it but the day arrived....we are sad to leave the friends we had made over the last month at the Ronald McDonald House, but are excited about the thought of sleeping in our own bed tonight. Joshua said his goodbyes to the friends he had made and Mike, Nana and Joshua head off in the AM for their drive home (Joshua can't wait to ride on his firetruck!). Jacob and I wait until 1100 for Auntie Amy (my sister) to pick us up and drive us to the airport....our flight is a little delayed with the weather...but we make it home in one piece.....
