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Jen is doing pretty well today. She is sleeping much of the day as over night they had to wake her every two hours to pee to get rid of toxins that hurt the bladder. She also was able to eat a poptart and drink some milk. It is the first thing she has been able to eat for a couple days.

Randy is headed back home for the night but may return late tomorrow to be here for her transplant on Tuesday morning. We are told the transplant very well may happen at 2am on the 28th. We do know the life saving marrow will arrive sometime tomorrow.

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So far Jen has handled the anti rejection drug, Anti–T cell globulin (ATG) fairly well. They started this IV drug at 10am and it will end here shortly. She got sick with it a couple of times and got the rigors for a short bit but with the premeds and then demerol, they were able to control it.

Soon the will start her chemo (cytoxan) and that drip will run for part of this evening. She will do this all over again tomorrow (Although the second day is better tolerate).

Updates as they happen. Have a good Saturday evening

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Pre-Transplant Weekend

I hear so many new meds and procedures, I can’t keep them all straight. So I got out the binder the James provides to try to learn some of them while I sit here and wait for Jen come back from her last round of radiation.

Jen has been routinely getting a drug called Ativan to help with the nausea from radiation. She hasn’t had any vomiting (yet) from the radiation but seems to be nauseous pretty quick after treatments. The biggest side effect she has experienced from this drug is sleepiness. But she also is tired from the radiation itself.

Jen’s radiation has been twice a day, for three hours each time. She has had three days of this. She is at her last round as I write this. I expect she will come back to room and sleep most of the evening away. The radiation Jen is getting is part of a clinical trial in which they have mapped her bones specifically and are targeting just those areas to protect her organs and mouth. Jen is only the thirteen person to undergo this trial here at the James.

Tomorrow will start the second part of her pre-transplant treatments, an iv drug to help protect against rejection (GVHD) and chemotherapy. The anti rejection drug, Anti–T cell globulin (ATG) will most likely make her feverish and give her the shakes. She did this with her infections in December and it was very difficult on her. Hopefully she doesn’t get like this and if she does, it doesn’t last long.

Once this is complete, she will start a chemo drug (Cytoxan) which is intended to wipe out her existing marrow, but along with it, her immune system. This will also cause the little hair growth she has had to again fall out, nausea, vomiting, mouth sores, diarrhea, and sometimes bladder irritation/bleeding. They will give her some premeds to limit the amount of nausea/ vomiting (given compazine for this), mouth sores, diarrhea and bladder irritation. They also find if they get her up to urinate every couple hours, the bladder irritation is less significant.

These two steps will be repeated on Sunday, with side effects being more apparent tomorrow. With that in mind, Randy will be joining me in Columbus this weekend so that I have his support as I often don’t sleep or eat well when things get rough and I’m on my own.

If you could please keep Jen in your prayers as tomorrow will be a rough day. For now, she is resting comfortably and saving up her energy for what tomorrow will bring.

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Day -6 is nearly done. Today Jennifer received two rounds of bone targeted radiation. Each round lasts about 2-3 hours since they do her body in sections. The goal with this clinical trial radiation is to protect her organs while receiving large doses of radiation. She will do the same tomorrow and Friday.

Jen’s companies of back pain from the first round for having to lay so still for so long. The second round they increased the amount of meds to help her relax and it was very helpful. She is however experiencing some nausea from the procedures.

This evening the plan to give Jen something to help her sleep. She has been having some problems staying asleep for the last couple weeks. With radiation starting at 630 am, hopefully she dozes early tonight.

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Day – 6

Day -6 is nearly done. Today Jennifer received two rounds of bone targeted radiation. Each round lasts about 2-3 hours since they do her body in sections. The goal with this clinical trial radiation is to protect her organs while receiving large doses of radiation. She will do the same tomorrow and Friday.

Jen’s companies of back pain from the first round for having to lay so still for so long. The second round they increased the amount of meds to help her relax and it was very helpful. She is however experiencing some nausea from the procedures.

This evening the plan to give Jen something to help her sleep. She has been having some problems staying asleep for the last couple weeks. With radiation starting at 630 am, hopefully she dozes early tonight.

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This week is the start of challenging weeks to come. Tomorrow evening, we will head to Columbus for early morning appointment at the James on Tuesday. . Jennifer will have another bone marrow biopsy. For her to move forward to transplant, her marrow has to be free of cancer. We then will meet with her doctors as a follow up from her appointment last week when she wasn’t feeling well. Although she still has a bit of a cough, it is much improved and the swelling in her neck/gland has gone down.

Jennifer felt well enough last evening to go to the Ottoville girls regional final game. I believe she had a fantastic time with her dad and sister. I even crocheted her a hat in the green and gold colors to wear.

If Jennifer is feeling well enough on Thursdsy, she will go with us to the girls state semi final game. I’m hoping to get a press pass to take pictures on the floor (if anyone can help make that happen). I would also love to get Jennifer to the floor to watch some of the game. Hopefully my good pall Dave B. can make it happen.

On Saturday, Jen starts her first of three days of pre-radiation treatment. These treatments are to protect her teeth from radiation. If the Ottoville Lady Green win their game Thursday, we hope to get to the final game then Saturday afternoon.

Then on Tuesday, March 21, Jen will be admitted to the James to start radiation and chemo, with three days of radiation, a day off, and then three days of chemo. Then on March 28, Jen’s life saving bone marrow will arrive! This we consider Jen’s rebirth day.

Her donor isn’t someone we know but found on the registry. All we know is this person is from the USA and is willing to give Jen a chance at life. We are allowed to write letters to the donor but we are not allowed to identify ourselves for one year. I am not sure how I go about saying thank you to this anonymous stranger who is willing to save my daughter’s life.

It will be a crazy, but exciting week. We are excited about our local girls hs team in the state tournament and also a bit on edge as we move forward in Jennifer’s treatments.

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Life Starts Now

Jen makes leukemia look easy. If she has pain, she hides it well. If she has worry or fear, it is disguised by a smile. I believe it is her faith that pushes her through….something she has always had but now so much more apparent.

She enjoys moments like each are golden….whether it is going to a hockey game with her brother and sister or enjoying an old family video with her dad. And although she sleeps more than most, when she is awake, we are greeted with smiles and conversation.

She is looking forward. Not only to several months and years from now but also to the days that will be here soon. She can tell you when opening day for her beloved Cleveland Indians is. And what day Beauty and The Beast comes out to theaters. Life doesn’t start when the cancer is gone and she no longer is getting treatments. She has too much to do to wait until then.

I have much to learn from my 29 year old daughter. She has taught me so much already. And I will enjoy each lesson as they come ….Hopefully as well as she teaches them.