We are working on a new plan. It looks like Alex will be admitted in two weeks. A lot of the delay is the donor's schedule. I respect the reasons why, and I am so grateful to have a 10 point perfect match. I am just worried about loosing her, if she gets otherwise committed.
Of course, there was *absolutely* NO sign of a runny nose at all today. None. Sometimes it just feels like we are spinning our wheels.
Now I have to figure out what to do with my two monkeys at home for two weeks. We aren't going anywhere, and are limiting exposure to friends to as little as we can, just so we can keep him healthy for admission.
Tuesday, August 23, 2011
Monday, August 22, 2011
Heart Beat
Alex's heart rate is low (we have seen this before). The anisthesiologist needs to see Alex when he wakes up, and we just heard that a trauma case just came in, and she is in an emergency...so, we wait...
Sleepy Boy
I am sitting next to my sleepy boy... He isn't awake yet. We are waiting for the chest x-ray to come back, before they release him...stay tuned!
Still Waiting
Alex is out of surgery. We still haven't seen him, but the doctor said everything went well. I don't think I will believe them until I see our brave boy.
Kisses
Eric and I just kissed Alex goodbye and watched him get wheeled away. I think what I am so upset about is how routine this has all become...
Angry
I was just informed, that it will be another hour... Now they don't even expect Alex to go into surgery until 6 pm...
Frustration
Surgery has been delayed for an extra 90 minutes. Alex is hungry... hasn't eaten anything since 7:30 this morning. Nothing seems to be going right today...
Delay
Today, we left our house in a limo, to check into the hospital. It was fun...the kids enjoyed the ride. Eric and I tried to be enthusiastic, but it was hard to be excited about pummeling our son's immune system into oblivion.
Unfortunately, a clear runny nose is keeping us from moving forward with the transplant.
Yep. A two week delay. So, we will come home after Alex's surgery today.
Unfortunately, a clear runny nose is keeping us from moving forward with the transplant.
Yep. A two week delay. So, we will come home after Alex's surgery today.
Saturday, August 20, 2011
Monday
On Monday, at 11:00am, Alex will be admitted to the hospital to start his work-up, including radiation and chemo, to prepare for the bone marrow transplant on August 30th.
The preliminary reports on his bone marrow biopsy and spinal fluid show no evidence of leukemic cells. So, we are all a "go".
There is a whole lot more to tell, and I promise to post more, once we are settled in the hospital for our 4-8 week stay.
The preliminary reports on his bone marrow biopsy and spinal fluid show no evidence of leukemic cells. So, we are all a "go".
There is a whole lot more to tell, and I promise to post more, once we are settled in the hospital for our 4-8 week stay.
Warriors 4 Alex Apparel Alternate Link
For those who were having trouble downloading the order form, here is an alternate link which should open it directly to print.
Warriors 4 Alex Apparel Alternate Link
Thanks to all who have already placed their order!
Warriors 4 Alex Apparel Alternate Link
Thanks to all who have already placed their order!
Thursday, August 18, 2011
Warriors 4 Alex Apparel
Many of you have been waiting for the announcement of the Warriors 4 Alex Apparel fundraiser for the Leukemia & Lymphoma Society.
Click on the link below to download the order form (as a PDF). Please make sure to send in your order by September 8, 2011.
Warriors 4 Alex Order Form
Select to download the order form. Then, just print the order form, and send a check to the address on the form! Easy!
This year, along with our previous offerings, we have Dri-Fit shirts for all our active friends and family. These shirts wick moisture away from the body, keeping you more comfortable while you are active.
Also, if anyone is interested in a baseball hat, please let me know. If we have enough interest, we may be able to order those as well.
Thank you for your support. All profits from the sale of these shirts go directly to the Leukemia and Lymphoma Society.
Click on the link below to download the order form (as a PDF). Please make sure to send in your order by September 8, 2011.
Warriors 4 Alex Order Form
Select
This year, along with our previous offerings, we have Dri-Fit shirts for all our active friends and family. These shirts wick moisture away from the body, keeping you more comfortable while you are active.
Also, if anyone is interested in a baseball hat, please let me know. If we have enough interest, we may be able to order those as well.
Thank you for your support. All profits from the sale of these shirts go directly to the Leukemia and Lymphoma Society.
Thursday, August 11, 2011
National Transplant Assistance Fund
Hello,
My name is Jim Trower and I am a great uncle to Alex Wilkison. I am sure you all are aware of little Alex's battle with T-Cell Lymphoma. He struggled with that disease for 2 years before he won that conflict. Unfortunately, one of the Chemo drugs he took induced genetic changes in his white blood cells. Six-year-old Alex is now facing a new battle with Lymphoblastic Leukemia. Cancer has given this little guy a one-two punch, and he is now waiting for a bone marrow transplant to overcome this newest medical struggle.
Putting emotions aside, what can we do for this family? Yes, they have medical insurance, but there are plenty of expenses that insurance will not cover. These extra expenditures amplify the hardship, not to mention the drain and anguish on Alex’s parents, Eric and Sara, who must still maintain and nurture the family, emotionally as well as financially.
There is an organization that helps with fundraising for transplant-related expenses. It is called the National Transplant Assistance Fund. I became familiar with this organization 15 years ago when my friend was going through a similar medical crisis. We set up a Campaign Fund for him at NTAF so that friends and family could donate to help with his expenses. The fund was available to him for uninsured medical and prescription costs, parking, travel expenses, caregiver costs, etc. I was very pleased with the way this organization operated, and it was a financial lifeline for my friend and his family.
We have now established a Campaign Fund in Alex’s honor at NTAF, for friends and family to help alleviate the financial burden that this young family is facing. NTAF keeps only 4 cents of each dollar and disburses funds only for transplant-related expenses thereby providing fiscal accountability to the donors. They have a 28 year track record and have received a prestigious four stars (highest rating) from Charity Navigator. All donations are tax-deductible to the full extent allowed by law. Please help.
Make checks payable to:
NTAF Northwest Bone Marrow Transplant Fund
Note in memo section:
In Honor of Alex Wilkison
Mail to:
NTAF
150 N. Radnor Chester Road, Suite F-120
Radnor, PA 19087
For secure credit card donations:
Go to the website
Call 800-642-8399 or click the "CONTRIBUTE NOW" button on the website.
Thank you so much for your prayers, good wishes and generosity,
Respectfully,
Jim Trower
My name is Jim Trower and I am a great uncle to Alex Wilkison. I am sure you all are aware of little Alex's battle with T-Cell Lymphoma. He struggled with that disease for 2 years before he won that conflict. Unfortunately, one of the Chemo drugs he took induced genetic changes in his white blood cells. Six-year-old Alex is now facing a new battle with Lymphoblastic Leukemia. Cancer has given this little guy a one-two punch, and he is now waiting for a bone marrow transplant to overcome this newest medical struggle.
Putting emotions aside, what can we do for this family? Yes, they have medical insurance, but there are plenty of expenses that insurance will not cover. These extra expenditures amplify the hardship, not to mention the drain and anguish on Alex’s parents, Eric and Sara, who must still maintain and nurture the family, emotionally as well as financially.
There is an organization that helps with fundraising for transplant-related expenses. It is called the National Transplant Assistance Fund. I became familiar with this organization 15 years ago when my friend was going through a similar medical crisis. We set up a Campaign Fund for him at NTAF so that friends and family could donate to help with his expenses. The fund was available to him for uninsured medical and prescription costs, parking, travel expenses, caregiver costs, etc. I was very pleased with the way this organization operated, and it was a financial lifeline for my friend and his family.
We have now established a Campaign Fund in Alex’s honor at NTAF, for friends and family to help alleviate the financial burden that this young family is facing. NTAF keeps only 4 cents of each dollar and disburses funds only for transplant-related expenses thereby providing fiscal accountability to the donors. They have a 28 year track record and have received a prestigious four stars (highest rating) from Charity Navigator. All donations are tax-deductible to the full extent allowed by law. Please help.
Make checks payable to:
NTAF Northwest Bone Marrow Transplant Fund
Note in memo section:
In Honor of Alex Wilkison
Mail to:
NTAF
150 N. Radnor Chester Road, Suite F-120
Radnor, PA 19087
For secure credit card donations:
Go to the website
Call 800-642-8399 or click the "CONTRIBUTE NOW" button on the website.
Thank you so much for your prayers, good wishes and generosity,
Respectfully,
Jim Trower
Tuesday, August 9, 2011
14 Days
In 14 days, Alex will be bombarded with radiation. He will have to hold still for 20 minutes while invisible rays obliterate his immune system. He will have to sit in a lead lined room all by himself, while Eric and I sit outside, and watch his sweet face through a monitor. The total body irradiation (TBI) will be repeated twice a day for four consecutive days. He will be awake, and conscious through the procedures. While he will not experience any pain during the treatments, the after-effects are overwhelming.
Some of the fallout from the radiation is dramatic and quick.
His bone marrow will disappear.
His hair will fall out.
His fertility will be destroyed.
His digestive system will be in chaos.
His jaw will throb with radiation poisoning.
His appetite will vanish.
His mouth will erupt in soars.
Other consequences of his treatment may take years to appear.
His eyes will develop cataracts.
His growth will be stunted.
His lungs will be scarred.
His heart will be weaker.
His brain function will be altered.
His body may develop other cancers.
I am overwhelmed with what my amazing boy will be going through. We have been busy, trying to flood his memory with good times, so that all of us can draw upon them when in the depths of his treatment.
All of this is weighing heavy on our hearts, including Alex. The other night, he told me:
"Mom, if some kid gets cancer - not me, but another kid - and he doesn't make it - he dies, his parents can always go adopt another kid".
My heart stopped as I digested this statement, this permission to love another child if he doesn't make it. My eyes welled up with tears, and I held him close and told him that while yes, it is true, the parents could adopt another child, they would never stop loving the child they lost.
Damn it - he is only 6 years old...
Some of the fallout from the radiation is dramatic and quick.
His bone marrow will disappear.
His hair will fall out.
His fertility will be destroyed.
His digestive system will be in chaos.
His jaw will throb with radiation poisoning.
His appetite will vanish.
His mouth will erupt in soars.
Other consequences of his treatment may take years to appear.
His eyes will develop cataracts.
His growth will be stunted.
His lungs will be scarred.
His heart will be weaker.
His brain function will be altered.
His body may develop other cancers.
I am overwhelmed with what my amazing boy will be going through. We have been busy, trying to flood his memory with good times, so that all of us can draw upon them when in the depths of his treatment.
All of this is weighing heavy on our hearts, including Alex. The other night, he told me:
"Mom, if some kid gets cancer - not me, but another kid - and he doesn't make it - he dies, his parents can always go adopt another kid".
My heart stopped as I digested this statement, this permission to love another child if he doesn't make it. My eyes welled up with tears, and I held him close and told him that while yes, it is true, the parents could adopt another child, they would never stop loving the child they lost.
Damn it - he is only 6 years old...
Monday, August 1, 2011
A long time
It sure has been a while since I have posted anything... it isn't that I don't have anything to say. It is the opposite. Words flood my mind, trying to process what comes next for our family.
I have a few partial posts that I started, but couldn't finish for one reason or another. So, I will recap what has been going on, and where we go from here.
I will start with Legoland:
When we woke up on Friday morning, Alex didn't really want to wake up. We turned on the TV to watch the final Space Shuttle launch, and tried to impress on the kids about what a marvelous and somewhat sad event this was. Alex asked if he could be an astronaut, and for the first time, I realized that era is over. I ⇔told him he may still be able to fly into space, but just not o a Shuttle. But I digress... the point is, that we expect that he will recover from this secondary cancer, and grow up to do great things.
We managed to get all of us dressed, and ' out the door to breakfast, but it wasn't quick. Alex was dragging. We took his temperature, and it was slightly elevated (99.0). We encouraged lots of water, and watched as he perked up after eating.
Hoping that his elevated temperature was a fluke, we walked across the street to LegoLand. After a bit of confusion over our free tickets, we rented a double stroller for the kids, and headed into the park. Alex only walked for a few minutes, and then sat down. We watched helplessly while he faded in the short four hours we were there. We tried everything to get his temperature down...we didn't want this to happen again. In our hearts, I think we knew what was happening. We went to an air conditioned restaurant, and made him down a huge glass of ice water. Unfortunately, his fever was stubborn and we agonizingly accepted defeat. We carried the kids back to the hotel in the hot and humid San Diego sun.
Silently, we gathered a few things, and hit the road to the hospital. The traffic was awful, and when we arrived, we hoped for a quick turn around. That wasn't in the cards. With an ANC of only 100, we hung our heads, an made a plan. Eric took Tessa back with him to the hotel to check out. I headed upstairs with Alex to the Oncology ward. I instantly hated the room. There was a mural of a mom, sitting on the beach with her kids. It screamed to me..."ha ha look what we can do, while you are stuck here". And we were stuck, from Friday night until Monday morning. The Ronald McDonald house didn't have room for us, but they were able to get us a room at a nearby Holiday Inn for a VERY reasonable rate. I stayed in the hospital with Alex, while Eric and Tessa moved in to the hotel.
Alex really wanted a special Lego set, so he asked me to go back to Legoland, and acquire the prize. My cousin Michele, and her kiddos joined Tessa and me while Eric entertained Alex. We met up with my Aunt Louise, and cousin Trevor at the park, and had an enjoyable day. I admit, that I felt guilty about being there without Alex...but I was glad Tessa could have some fun with her cousins too.
My battery is running low, so I will post more after it is charged back up... I promise to get you all caught up soon.
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