Well, it's Friday afternoon and no phone call, so I am pretty confident that the scans were clear. We won't get the definitive word until Wednesday, but it would be extremely unlikely that they are just sitting on this information. We went back today for EKG, Echo, and xrays and he did great and was really cooperative.
Also, I think I found the perfect part-time job. It starts mid-October, and it is afterschool math tutoring through the No Child Left Behind program. I'd be working as an independent contractor through Mathnasium working at two Title I schools in the West Valley. The pay is much higher than most part-time jobs I've looked at, and the hours are really perfect as I would work approximately 2:30 - 5 and do administrative work from home according to my schedule. I think it is going to really be a good thing.
Thanks for all of the support and prayer through the waiting!
Friday, September 4, 2009
Friday, August 28, 2009
The anniversary
Yesterday, August 27th, was one year to the day that I took Aaron in to urgent care because his leg was swollen. One year ago yesterday I had never heard of Ewing's Sarcoma, and was making plans for Aaron to start preschool. Little did I know that I was going to be the one learning great lessons! It was a bit of a surreal day to be honest just looking back and remembering the details of how this all began. That afternoon in the emergency room when the doctor told us that there was a mass and erosion to the bone, I did not think Aaron had long to live. I am so thankful to have him here happy and healthy, and doing much more than I ever would have imagined. Tricia was good enough to put together a little video clip of him doing a couple of activities that you may enjoy. He has scans coming up this coming Wednesday, and as always I ask for prayer that they show no evidence of disease, and that I would draw close to God during the waiting and have peace instead of worry. I will post as soon as I hear news as to the results. Also, I am looking for some kind of part-time job that works around our appointments. If you know of anything please message me the info! Now enjoy this little clip of a full of life boy!
Tuesday, July 21, 2009
100 day evaluation
We had an appointment with the bone marrow transplant yesterday to go over Aaron's progress over 100 days post transplant and everything looked great. When Aaron labeled an animal in a book as a "dwarf lantern shark", the doctor told me she thinks his cognitive ability is fine! He had a hearing test last week, and his hearing was off the charts it was so good. In fact, the audiologist told me he should use ear plugs in movies and anywhere with a sound system since he hears things louder than most people. Chemo can sometimes significantly affect hearing, so this was great news.
They will get back to me in a week with results about his current liver function and kidney function, and they will continue to monitor his thyroid and growth hormones. As he approaches age ten they will refer us to an endocrinologist to see if any synthetic hormones will need to be used going into puberty if his growth is not where it should be. I do pray that he will reach full height. I know this is a small thing compared to saving his life from cancer, but I hope that not even one inch was robbed from him.
They also told me that in September they will clear him for going to school, Sunday School, or other functions involving groups of children. The bigger issue with this will be his leg, as a fall during rough play could still be problematic. I think I am going to have a hard time letting go of some of these things and letting him return to normal life, but I know he will soon be ready. He is still on the "fragile" side, in that he gets cold so easily and is overly sensitive to his environment, but the further he is out from treatment the more these things will subside.
Physical therapy is going well, and while it is a struggle sometimes to get him to use the walker instead of crawling he is getting the hang of it. It is a huge help in daily life that I am not constantly lifting him and the wheelchair in and out of the car. Now when we are going out he walks to the car and climbs up into his seat. This small thing makes daily living so much easier!
Please pray as we make decisions - financial, for Ben's treatment, our business. This year (yes, next month it will be one year since the dreadful day this started) has taken it's toll in so many ways and it's not a fun process to rebuild. On the flip side though, the learning and growth that occurs during the hard times is probably the best and most valuable, so I better learn something and be wiser in someway to make this worth it!
Thanks,
Barbara
They will get back to me in a week with results about his current liver function and kidney function, and they will continue to monitor his thyroid and growth hormones. As he approaches age ten they will refer us to an endocrinologist to see if any synthetic hormones will need to be used going into puberty if his growth is not where it should be. I do pray that he will reach full height. I know this is a small thing compared to saving his life from cancer, but I hope that not even one inch was robbed from him.
They also told me that in September they will clear him for going to school, Sunday School, or other functions involving groups of children. The bigger issue with this will be his leg, as a fall during rough play could still be problematic. I think I am going to have a hard time letting go of some of these things and letting him return to normal life, but I know he will soon be ready. He is still on the "fragile" side, in that he gets cold so easily and is overly sensitive to his environment, but the further he is out from treatment the more these things will subside.
Physical therapy is going well, and while it is a struggle sometimes to get him to use the walker instead of crawling he is getting the hang of it. It is a huge help in daily life that I am not constantly lifting him and the wheelchair in and out of the car. Now when we are going out he walks to the car and climbs up into his seat. This small thing makes daily living so much easier!
Please pray as we make decisions - financial, for Ben's treatment, our business. This year (yes, next month it will be one year since the dreadful day this started) has taken it's toll in so many ways and it's not a fun process to rebuild. On the flip side though, the learning and growth that occurs during the hard times is probably the best and most valuable, so I better learn something and be wiser in someway to make this worth it!
Thanks,
Barbara
Thursday, July 2, 2009
Liver enzymes normal!
Last week they added another liver enzyme test to Aaron's blood work and I got a call that it came back perfectly normal! They are not sure why the previous one had been elevated, but thankfully it is fine now. Also, Aaron started physical therapy last week at PCH. I love his therapist and so does he, and he did a great job. He will go back today for session two. I'll get some pictures to post, and you may even see the slight shadow of hair! His eyebrows are back almost completely, and there is a very fine smattering of hair now on his head.
Ben finished his assessments and as I expected he was diagnosed with autism. The good thing about the diagnosis is it should mean help in getting services. Please just pray that I can find what works for him. I see all of things he can do - he understands what I say, he is very affectionate, he makes great eye contact - and I think that he can make great strides.
I saw this poem, and I thought it was really great. I'm so thankful that at least I have people who will let me talk about "my shoes".
"A Pair of Shoes"
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
~Author unknown
Ben finished his assessments and as I expected he was diagnosed with autism. The good thing about the diagnosis is it should mean help in getting services. Please just pray that I can find what works for him. I see all of things he can do - he understands what I say, he is very affectionate, he makes great eye contact - and I think that he can make great strides.
I saw this poem, and I thought it was really great. I'm so thankful that at least I have people who will let me talk about "my shoes".
"A Pair of Shoes"
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don't hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
~Author unknown
Tuesday, June 16, 2009
Bone marrow stable
I got a call with the results from the bone marrow biopsy today, and there is no cancer (they didn't expect to see anything) and the bone marrow is stable for being 90 days post-transplant. She said it is at 50%, which is ok and he won't need another infusion of his cells. His liver enzymes are still slightly elevated so they will continue to watch to see why and if it continues. We will start going every two weeks now for labs, and hopefully later this week I will get his physical therapy schedule.
Ben is still in the midst of his evaluations at Phoenix Children's. It was a little hard today to see the areas that he is just not even on the same page as most two year olds. We finish that up on Saturday, and then should be able to get a plan to start him on some sort of program.
Please pray that they will figure out what is going on with Aaron's liver enzymes and that it will be a simple thing, and that I will get a good plan and program to help Ben with his communication.
Thanks!
Barbara
Ben is still in the midst of his evaluations at Phoenix Children's. It was a little hard today to see the areas that he is just not even on the same page as most two year olds. We finish that up on Saturday, and then should be able to get a plan to start him on some sort of program.
Please pray that they will figure out what is going on with Aaron's liver enzymes and that it will be a simple thing, and that I will get a good plan and program to help Ben with his communication.
Thanks!
Barbara
Tuesday, June 9, 2009
Scan Results
As far as tumor is concerned, the scan results were all good. There is no evidence of any activity at this point. Yea! One thing that did become evident from all of the extended blood testing is that the bone marrow and blood system are not where they should be at 90 days post transplant. This is not entirely unexpected, they are assuring me. Because Aaron is so young and his body is growing and requiring a lot, his system is under stress and "fragile". His liver is actually producing blood cells to try to keep up with the need. On Thursday they will do the bone marrow aspirate, and if it shows that the bone marrow is too fragile then he will get a transfusion of more of his stem cells. We have another bag of cells in the deep freeze that were not needed for the transplant, so if he needs a boost they are there. This would only mean one night at the hospital at most.
The main thing we need to do is still protect him from illness which would further stress his system, and try to get him to eat a wide variety of foods to gain some more weight and work towards better nutrition.
Another time of waiting is over, and I'm thankful for the good news! We will do full body scans again in three more months.
Thanks for all of the prayers that went up for Aaron this past week! I continue to see God work good things through this bad situation, and my continued prayer is that He would take this ugly thing and work it into something beautiful in Aaron's life down the road.
Thanks,
Barbara
The main thing we need to do is still protect him from illness which would further stress his system, and try to get him to eat a wide variety of foods to gain some more weight and work towards better nutrition.
Another time of waiting is over, and I'm thankful for the good news! We will do full body scans again in three more months.
Thanks for all of the prayers that went up for Aaron this past week! I continue to see God work good things through this bad situation, and my continued prayer is that He would take this ugly thing and work it into something beautiful in Aaron's life down the road.
Thanks,
Barbara
Friday, June 5, 2009
Scans Today
It's time for the three month scans today (his last ones were just before the stem cell transplant). Of course I am pretty nervous and it's going to be a long weekend of waiting. If I ever wanted to learn patience and to learn to wait and rest in the Lord it is through the times of waiting for test results! His port was accessed at a clinic visit yesterday so that removes some of the stress for him, but they'll need to do an i.v., which never is easy on Aaron. I am going to ask that they give him Versed for that so please pray that they will listen to me. He still talks about the last i.v from three months ago, and I'd rather him forget the experience!
The California trip was wonderful and both boys had a fabulous time. We went to SeaWorld, the San Diego Zoo, and a few trips to the beach. They both loved the beach but Ben especially was thrilled to run in the waves. Thanks again to the Core family for letting us use the condo (which was fabulous and with a great view of the ocean) and to Bridget at HopeKids for arranging the free attraction tickets.
Please pray for clear scans and that the day goes well. Today Aaron will get ct scans of chest and abdomen, mri, brain mri, PET scan, nuclear medicine bone scan, x-rays of the femur, and to top it off bone marrow needle aspirates. Thankfully he will be under general anesthesia for most of it.
Also, please pray for the Dugan family. I've mentioned Amber before, but last week her body finally gave out and she lost her fight to Ewing's after five years of battling.
Thanks,
Barbara
The California trip was wonderful and both boys had a fabulous time. We went to SeaWorld, the San Diego Zoo, and a few trips to the beach. They both loved the beach but Ben especially was thrilled to run in the waves. Thanks again to the Core family for letting us use the condo (which was fabulous and with a great view of the ocean) and to Bridget at HopeKids for arranging the free attraction tickets.
Please pray for clear scans and that the day goes well. Today Aaron will get ct scans of chest and abdomen, mri, brain mri, PET scan, nuclear medicine bone scan, x-rays of the femur, and to top it off bone marrow needle aspirates. Thankfully he will be under general anesthesia for most of it.
Also, please pray for the Dugan family. I've mentioned Amber before, but last week her body finally gave out and she lost her fight to Ewing's after five years of battling.
Thanks,
Barbara
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