| March-April 2006 |
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| March 2006 March 28, 2006 Today was the day we finally had our official meeting with CHEO and Dr Murray to decide what course of action we will be taking. Mike and I went into the meeting feeling like we knew what we wanted, what the best thing for Jacob was.....and we came out feeling as though we might be starting down a path that could ultimatly take Jacob's life.... Since our vist to the states on Feb 1, Jacob has remained on the ACTH injections daily, his IVIG every three weeks and various other medications to combat the side effects. Although he has improved since then, he still has major anxiety problems with leaving Mike, is still very agressive and is obsessive about how his daily schedule is run. Jake is now close to 19kg (he was at 12kg in Jan) and is out of breath just walking down the hallway. Because he has been on the ACTH daily at a high dose for over 2 months he has developed severe cushing syndrome (fluid retention) and is gaining weight weekly at an alarming rate. He is on a sodium reduced diet....but the hunger caused by the ACTH is overwhleming, and he asks to eat almost every 30 minutes. He is having pain in his legs and feet, caused by the amount of weight his little body is having to carry, and asks to be carried everywhere. It was decided today that we will be starting on the Rituximab protocol this coming Monday at CHEO (the infusion takes about 6 hours), there is a chance of a life threatening anaphalatic reaction, and the infusion will be intense. Up to 48 hours after the infusion Jacob can run into complications. Jacob will receive an infusion weekly for four weeks and will remain without B cells for 6 to 9 months (if Jacob handles the first two infusions well there is a chance that he can receive the last two here in Sudbury). Because Jacob is already so immuno-suppressed the 6-9 months following the Rituximab will be grueling. Jacob will be at risk for life threatening infections (even more so then when he was on CHEMO for his Neuroblastoma). If the Rituximab works, we will be able to start a very slow wean off the ACTH over the next 9-12 months. Jacob will also remain on the IVIG infusions every three weeks. During the call we were told that treatment for patients like Jacob, with severe OMS, are not usually successfull and that his chance for recovery does not look good. Mike and I refuse to accept this fact, and remain hopeful that we have not exhausted all treatment options yet.....we struggle daily....up many sleepless nights wondering if we are making the right choices...... Our guestbook is now up and running, we will try to check the website daily and I will update from Ottawa as we start treatment..... April 2006 April 13 I have written and re-written this update about 15 times now and I am still having trouble with how to express what has happened in the last couple weeks.... Jacob began his Rituximab protocol on April 3rd at CHEO, he was pre-medicated with Tylenol, Benadryl, and a steriod, but still had a reaction during the treatment. He started to cough about an hour into the infusion and then begain to have problems with his tonge and his breathing became very fast.....all was brought under control by another large dose of IV Benadryl, and we were sent home on Wednesday. We returned to CHEO for our next infusion this past Monday and the infusion went smoothly without a reaction. As many of you know Jacob has been limping for about a month, the pain in his legs has become worse in the last couple weeks and he is having a lot of trouble walking. A bone scan was ordered Tuesday of this week, just after his scheduled Echocardiogram.........Mike and I had the van packed on Wednesday morning and we were just getting ready to leave when the phone rang at the Ronald McDonald House....it was our Oncologist. As soon as I answered the phone I knew the news could not be good. I had trouble even forming the sentence to Mike that we had to go up to the MDU and have a meeting before we left. The boys were taken to the playroom and Mike and I were wisked off to a room. The words didn't really sink in for about 10 minutes....and both Mike and I saw our little boy flash before our eyes. The bone scan had come back positive....Jake has uptake in both his wrists, a rib on the right side, his vertibrae, his entire left leg and into his right leg. We have been told that the only cause for this much uptake is Neuroblastoma.....they will be running two weeks of testing starting next Tuesday. Jake will have an MIBG scan, MRI, bone marrow aspirate, bone biopsy and an ultrasound done to determine where the original tumor is (because Neuroblastoma does not start in the bones there is a tumor somewhere in his body). Jacob is now in the high risk category and only has a 40% chance or survival at this point......both Mike and I spent most of Wednesday crying.....completely devastated. Jacob will require 6 months of very high dose Chemotherapy, after the first round he will have stem cells collected and harvested for a stem cell transplant after the Chemotherapy is completed (the stem cell transplant will be done at Sick Kids in Toronto some time in November- Jake will be in hospital and in isolation for about 4-6 weeks). If there is still uptake after the stem cell transplant Jacob will require Radiation to the affected areas. Because Jacob has received the Rituximab we are in a lot of trouble once he starts the Chemotherapy....his entire system will be devastated by the Chemotherapy and he will be a very high risk for infections. We will be leaving for Ottawa on Monday and will remain there until we finish our first round of Chemotherapy. I will continue to update as we receive word on the test results. Thank you to everyone for your support and prayers for Jacob and our family.....our guestbook is giving us problems again....please use our home address mdsquarz@sympatico.ca if you wish to leave us messages (I can check our e-mail from Ottawa). May 15, 2006 We returned to Sudbury the day after Jake's bone biopsy and poor Jacob started vomiting in the van on the way home......we ended up having to take him into the Pediatric floor in Sudbury at 2am on Tuesday night and he was dehydrated. He was admitted for 12 hours and received some potassium and gravol through his central line. Jake needed an IVIG treatment at the cancer centre on Thursday and his potassium was low again. Jake has required blood work every other day since our return until last Friday to monitor his potassium levels......but finally things seem to be under control! Jacob required an MIBG Scan, Bone Marrow biopsy (in both hips), MRI, Ultrasound, and an open bone biopsy (a piece of his left femur was taken out). To date we are still waiting on the final bone biopsy results, but so far they have been unable to find Neuroblastoma----a miracle. The MIBG scan, bone marrow aspirate, ultrasound, and urine have been all negative for Neuroblastoma. The doctors are baffled and they are currently going over his bone biopsy to try and figure out what is wrong with Jake.....the MRI shows that the bottom half of Jakes Femur is black on the scan. If there is ever a time in your life you want a doctor to be wrong it is in this instance......we have gone from thinking we could loose Jake in a couple months to having some hope that just maybe everything will be OK. I still can't sleep at night and feel like I am going to vomit everytime I think about things.....but so far the news has been positive. If anything this experience has made Mike and I realize just how important it is to enjoy every day we have with Jacob. Hopefully we will have some results in the next couple of days and know what course of treatment will be needed. I will update as soon as we know........thank you to everyone for their support....I don't think we could have made it through this last month without it. |
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