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Accommodations

As we sit waiting for Jen’s next appointment, I look over to see her smiling. She is watching a video on her phone but then sees me watching her. She hands me her phone and tells me to press play.

The video is one of those feel good moments where a group of boys make accommodations to their game of basketball so that another boy in a wheel chair can participate. As I watch it, Jen smiles and then looks out the giant window in front of us.

There are people and cars moving about on this glumly day in Columbus. Those out there have no need for accommodations but those around us, that is not the case. The older gentleman down the hall talking to his son as they wait for their love one to return from radiation. And to our left, another older couple waiting quietly together. Jen is definitely one of the younger people here being treated.

Nearly everyone who moves about us has a walker or a wheel chair, many without hair and many with some additional medical equipment. A older man walks by holding the hand of another as if he was a child holding the hand of his mother. I assume it is his wife’s hand he holds but the empty gaze in his eyes tells me he isn’t really sure about much around him.

This is reality for us…fo16991819_391836147841889_210909471154883614_or many others. Once a life as those on the other side of the window, now the one where accommodations are needed. Their was a time I hadn’t understood or cared about the accommodations. Now even the large silver shiny button on the wall to open a door seems to be so very important for those without strength to open the dour or for those who arent walk freely through it.

I have countless times throughout this painful path talk about what it has taught me and about seeing the blessings that surround us. I’m not sure I am heard. I hope I am. We spend too much time not understanding how wonderful it is you don’t need accommodations. Too much time only taking care of our own struggles without care of those who walk painful paths like this. Too much time complaining without notice of how truely blessed we are.

Someday I hope I can return to the world of no need for accommodations but be like the boys in video Jen shared with me. And when Jen can once again move about without these, i hope we still take notice and reach out to those who continue to need them. And continue to see how blessed we are in this world.

Posted on by rallytogetherwithjengmailcom

Transplant Date Set

Jennifer and I got home from her appt. in Columbus about an hour ago. It was a long day with lots of meetings.

Her first meeting was with PT. They got a baseline of where she is in her strength. This will help them understand what she looses through the process of transplant. After PT, we met with nutrition. Again a baseline of where she currently is, how much she is currently eating and what foods she is able to tolerate and how much weight loss she has had thus far.

We then met with her social worker, followed by her transplant doctor, followed by three different individuals who explained clincial trials she qualifies for. We learned Jennifer’s donor is from the USA and that we will be able to have anonymous contact with this individual post transplant and after a year both parties can identify themselves. We also learned her last bone marrow had no signs of leukemia, however since the last bone marrow biopsy will be more than five weeks ago by time of transplant, she will have another biopsy next week. And we learned a set date for transplant (as long as her biopsy comes back still in remission). Originally she was going next week for three days of IV outpatient treatment followed by admission. Because her donor was unable to meet that schedule, that has changed to IV outpatient treatment from March 18-20, with admission on the 21st and transplant on the 28th.

Also the doctor gave me some positive news. We had been told previous that Jen needed to live in Columbus until day 100. He said that if Jen is doing well and is to the point of only needing to be seen once a week, we can return home at that point. This could shorten her stay in Columbus by several days/weeks. For now, we just take it one day at a time.

The first clinical trial they will do with her is where they take a bit of blood several times through the process and watch for signs of Graft Verses Host Disease (GVHD). The trial is to see if there are markers that show up prior to the disease showing outward signs. This also has a baseline that may down the road help them see possible development of the disease.

The second clinical trial is where Jen wears a fit bit for 5 weeks. During this time they measure how much she is moving and see the coloration between activity and recovery times. And added bonus is she gets to keep the fit bit at the end.

And the final clinical trial was one they had measured her for a couple weeks ago. She is to receive a bone targeted radiation that is to protect her organs. She has been approved for this trial and if Jen decides to move forward with it, it will be the plan for her radiation.

So although a long day, we gained a ton of knowledge about the upcoming days, weeks, and months. Jen remains very positive and is ready to put an end to this disease and start living her life again. We are so impressed with her strength and her faith in God and in the staff at the James.

Posted on by rallytogetherwithjengmailcom

Accommodations

As we sit waiting for Jen’s next appointment, I look over to see her smiling. She is watching a video on her phone but then sees me watching her. She hands me her phone and tells me to press play.16991819_391836147841889_210909471154883614_o

The video is one of those feel good moments where a group of boys make accommodations to their game of basketball so that another boy in a wheel chair can participate. As I watch it, Jen smiles and then looks out the giant window in front of us.

There are people and cars moving about on this glumly day in Columbus. Those out there have no need for accommodations but those around us, that is not the case. The older gentleman down the hall talking to his son as they wait for their love one to return from radiation. And to our left, another older couple waiting quietly together. Jen is definitely one of the younger people here being treated.

Nearly everyone who moves about us has a walker or a wheel chair, many without hair and many with some additional medical equipment. A older man walks by holding the hand of another as if he was a child holding the hand of his mother. I assume it is his wife’s hand he holds but the empty gaze in his eyes tells me he isn’t really sure about much around him.

This is reality for us…for many others. Once a life as those on the other side of the window, now  one where accommodations are needed. Their was a time I hadn’t understood or cared about the accommodations. Now even the large silver shiny button on the wall to open a door seems to be so very important for those without strength to open the door or for those who arent able to  walk freely through it.

I have countless times throughout this painful path spoke about what it has taught me and about seeing the blessings that surround us. I’m not sure I am heard. I hope I am. We spend too much time not understanding how wonderful it is you don’t need accommodations. Too much time only taking care of our own struggles without care of those who walk painful paths like this. Too much time complaining without notice of how truely blessed we are.

Someday I hope I can return to the world of no need for accommodations but be like the boys in video Jen shared with me. And when Jen can once again move about without these, i hope we still take notice and reach out to those who continue to need them. And continue to see how blessed we are in this world.