OMG what a day!!! We went to CHOP!!! We set off for the train station and were amazed by how helpful people are! Two kids and pushchairs on trains is not fun but everywhere we went people were more than happy to help us! To see the hospital in all its glory was breathtaking. It is absolutely huge! The building soared above us and was intimidating at first but once we got in and past security it was so serene. Music being played, lots of child friendly sculptures and activities. We met the oncology team who were fantastic. A detailed meeting with Dr Maris who is the head of the treatment programme left us feeling more positive than ever that this really is the right thing to do with Jamie. So specialist are they here, that they have their own Neuroblastoma nurse and Neuroblastoma social worker! I guess we'll be top of their list then as they saw how difficult Jamie can be!!! Just because the plasters that they use here are not the same as in Germany he went mental! We did warn them!
So we then went for lunch in the food court. What an experience! Any type of cuisine available and freshly cooked before your eyes. In case you got bored standing in the line then you could watch individual chefs on the monitors!! Jamie really enjoyed pesto pasta and said "I love this!"
The afternoon was just as busy with blood samples, cleaning the broviac and meeting the radiotherapy team. Jamie's platelets are now at 50,000 which means that they are going up on their own!!!! They are concerned about Jamie's weight so the nutrionalist will chat with us. He will no doubt need a feeding tube as he is losing weight. Another bit of good news - those that know us and Jamie will be aware of how difficult it has been to administer all the medication since completing high dose but we can stop it now!!!!!! Still needs the dreaded Kepinol though :(
The radiotherapy team will begin their testing on Friday with a general anaesthetic. Its quite a large area that needs radiotherapy but this will help prevent relapse in the primary site. We begin radiotherpay a week on Monday. 12 sessions under sedation as outpatient. The long term side effects are quite upsetting but what choice do we have? To give Jamie the best chance in life, he has to have it.
Jamie really enjoyed travelling on the train but has been upset as we didn't see Alvin the chipmunk today!!
So much has happened in the last few days that it's difficult to get our head around the fact that we are actually here but things will calm down soon I hope!!
Love to you all and a massive thank you for helping us get here!
So we then went for lunch in the food court. What an experience! Any type of cuisine available and freshly cooked before your eyes. In case you got bored standing in the line then you could watch individual chefs on the monitors!! Jamie really enjoyed pesto pasta and said "I love this!"
The afternoon was just as busy with blood samples, cleaning the broviac and meeting the radiotherapy team. Jamie's platelets are now at 50,000 which means that they are going up on their own!!!! They are concerned about Jamie's weight so the nutrionalist will chat with us. He will no doubt need a feeding tube as he is losing weight. Another bit of good news - those that know us and Jamie will be aware of how difficult it has been to administer all the medication since completing high dose but we can stop it now!!!!!! Still needs the dreaded Kepinol though :(
The radiotherapy team will begin their testing on Friday with a general anaesthetic. Its quite a large area that needs radiotherapy but this will help prevent relapse in the primary site. We begin radiotherpay a week on Monday. 12 sessions under sedation as outpatient. The long term side effects are quite upsetting but what choice do we have? To give Jamie the best chance in life, he has to have it.
Jamie really enjoyed travelling on the train but has been upset as we didn't see Alvin the chipmunk today!!
So much has happened in the last few days that it's difficult to get our head around the fact that we are actually here but things will calm down soon I hope!!
Love to you all and a massive thank you for helping us get here!
3 comments:
Maddie says that all you have to do to make the chipmunks dance is put some funky music on, apparently! (And she's 10!!)
I hope the staff at CHOPS are as uper as in Duss and that you feel well supported in everything you choose for Jamie. There are no easy options, just the best ones - long term.. xxxx
Love reading these updates - please keep them coming!
Good to hear that jamie is still being jamie!!! I am sure Alvin has just gone off to find some friends for a party with him!!!!
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