Friday, July 18, 2008
Phase 3
Jacob's journey is moving on into phase 3 chemotherapy today - interim maintenance.
We had a slight speed bump in getting here, Jacob caught a virus last weekend and Dr Odom wanted to give him time to recover from that before starting back on the daily chemo. He is much better and as of last night he is back on the meds.
Interim maintenance will last for two months and consists of high amounts of oral chemotherapy and fewer clinic visits. Nightly doses of 6MP will continue and we are adding in a new oral agent, Methotrexate, which he will take once a week. The Methotrexate he has had previously in the liquid form via his spinal tap. In addition to this he will be back on the steroids for 5 day windows through out this phase. We are only scheduled to go to the clinic once (halfway through) this phase for a spinal tap. We are used to going every week so it was weird when we left on Tuesday to say "Have a nice month!" All of the ladies at the clinic hold such a special place in our hearts and we have gotten used to seeing them every week - they have been a definite perk in all of this.
The really cool thing about this phase is it allows for us to go ahead with Minnesota vacation plans. We leave in 28 days! At this point the only medical thing we are expecting to do while on vacation is a blood draw to get a CBC. You have no idea how huge that is. What a great window to rest and enjoy friends and family and to celebrate the wonderful life we have been given.
Once we return from Vacation we will be starting school and then in the middle of September we will start phase 4 - delayed intensification. For two months we will have, well, intense amounts of chemotherapy. I do not know the details yet but the Doctor mentioned that it will look a lot like induction did - numbers down to 0, dietary limits, isolation (he will miss some school), and very likely a re hospitalization.
We did not know we were doing this round until last week and it was very sobering. Jacob has been doing so well and with next to no side effects it has been hard to even think of him as being sick. In my mind I had us all the way to maintenance and cure. In my heart I think that is where God is taking us - this is just a reminder to walk the journey step by step. It has also been a reminder that for now my plate is already full in just taking care of my family - and that is where my focus needs to be. How lucky I am to be able to do that full time!
Wednesday, July 16, 2008
The smell of burning ...
The smell of burning hair is one of the worst smells there is.
Tonight we were doing our job as good Americans and getting ready to throw some beef on the grill. Brian had already fired up the grill and in answer to his wifes request - went out to give it a quick brush cleaning. Lifting the lid and not seeing any flame he automatically reached out and pushed the starter button.
Think ENORMOUS fireball.
And as bad as the smell of burnt hair is (eyebrows, lashes, hair) it is so much better then the smell of burnt flesh, which by all rights should of had us doing more then applying a little aloe.
You may call it luck... But I would like to say "Thank You God!" for protecting my husband tonight.
Tonight we were doing our job as good Americans and getting ready to throw some beef on the grill. Brian had already fired up the grill and in answer to his wifes request - went out to give it a quick brush cleaning. Lifting the lid and not seeing any flame he automatically reached out and pushed the starter button.
Think ENORMOUS fireball.
And as bad as the smell of burnt hair is (eyebrows, lashes, hair) it is so much better then the smell of burnt flesh, which by all rights should of had us doing more then applying a little aloe.
You may call it luck... But I would like to say "Thank You God!" for protecting my husband tonight.
Tuesday, July 15, 2008
Fun Day Cancelled
Today at Jake's appointment, the Dr. suggested it was best that we put our trip to Elich on hold.
One of the things I forgot to add to the last post was that over the weekend Jake ran into some issues. He appears to have contracted a virus of some sort as Saturday he spent most of the morning dealing with a stuffed up head and plenty of vomiting. The Dr. provided an anti-nausea prescription that worked wonders. He was back to his chipper self in no time at all.
At the clinic today, he is struggling with some congestion and a runny nose. With the changes we are looking at making to his treatment, there was some concern that there may be some issued with the virus that he is fighting. Because of this, the Dr. postponed the start of the treatment for a couple of days to give his body a chance to rid itself of this "crud". She also asked that he not do any swimming for the next couple of days to help give his body the best chance to be able to handle the new treatment. She also said that it would be best to not spend all day out in the sun, getting exhausted; as this would just delay the time that it would take his body to fight off the virus.
As we have said from the beginning, we have the BEST doctors caring for him. Because we respect them so much and they have been incredibly honest and straightforward with us from the beginning, it would be foolish for us to not heed their suggestions.
His counts from the blood tests looked good today.
One of the things I forgot to add to the last post was that over the weekend Jake ran into some issues. He appears to have contracted a virus of some sort as Saturday he spent most of the morning dealing with a stuffed up head and plenty of vomiting. The Dr. provided an anti-nausea prescription that worked wonders. He was back to his chipper self in no time at all.
At the clinic today, he is struggling with some congestion and a runny nose. With the changes we are looking at making to his treatment, there was some concern that there may be some issued with the virus that he is fighting. Because of this, the Dr. postponed the start of the treatment for a couple of days to give his body a chance to rid itself of this "crud". She also asked that he not do any swimming for the next couple of days to help give his body the best chance to be able to handle the new treatment. She also said that it would be best to not spend all day out in the sun, getting exhausted; as this would just delay the time that it would take his body to fight off the virus.
As we have said from the beginning, we have the BEST doctors caring for him. Because we respect them so much and they have been incredibly honest and straightforward with us from the beginning, it would be foolish for us to not heed their suggestions.
His counts from the blood tests looked good today.
- ANC Count was 1950
- Platelet levels were back to a normal level
- Cell counts were all in the zone that they need them to be in order for the chemo to be effective.
Monday, July 14, 2008
Changes in Treatment
Tomorrow is the the final Dr's. visit for a couple of weeks. Jake will be getting an IV push of some chemo treatment as well as some blood drawn for testing. After tomorrow, we will be starting the next phase of treatment. Consolidation is the title of this next phase. The purpose of this phase is to kill off any of the leukemia cells that may be hiding. The medications that he will be receiving will likely be the same as the ones he has been taking for the last couple of months. The biggest difference will be the schedule of these meds. They will be adjusting the doses of these so that he receives some of the meds for 1-5 day stints a couple of times throughout this stage. This stage typically lasts 1-3 months.
In talking with the doctor last week, it sounds like they are going to want to have Jake go through another phase of induction in the fall. This will likely come just after school starts for him. We have not talked about this with him yet, mainly because I am not sure we truly understand what that will entail for him.
Because of the changes coming up in his treatment, the Dr is expecting his immunity to take a dip again. To help make sure we don't miss our chance, we are all going to Elich Gardens. For those of you out in MN, it is the equivalent of Valley Fair. The library that the boys go to had an incentive plan where if a child read 12 hours, they could submit a completed form to receive a ticket for free admission. Since we may not be healthy enough to get their later this year, we felt it was best to sneak our trip in now.
We'll try and post some stats from tomorrow.
In talking with the doctor last week, it sounds like they are going to want to have Jake go through another phase of induction in the fall. This will likely come just after school starts for him. We have not talked about this with him yet, mainly because I am not sure we truly understand what that will entail for him.
Because of the changes coming up in his treatment, the Dr is expecting his immunity to take a dip again. To help make sure we don't miss our chance, we are all going to Elich Gardens. For those of you out in MN, it is the equivalent of Valley Fair. The library that the boys go to had an incentive plan where if a child read 12 hours, they could submit a completed form to receive a ticket for free admission. Since we may not be healthy enough to get their later this year, we felt it was best to sneak our trip in now.
We'll try and post some stats from tomorrow.
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