Nolan Strong a beautiful but heart wrenching story.
I’m back here in Columbus with Jennifer. She is still making others on the transplant floor look bad as she has rolled through day +8 now without fever or vitals being an issue. Her and I went to the support group meetings they have here for patients and caregivers. The nurse and social worker were amazed someone at day +8 allogeneic BMT (meaning non related donor) was up and going to a support group meeting.
Having said that, I can tell you Jen is feeling fatigued. She still cannot overcome this cough and she told me this evening she just can’t get comfortable and rest like she wants. She fought tears back while telling me this. So now I’m on a mission to find her some relief. I pride myself in being persistent. …. aka Momma Bear.
We found blessings everywhere we could find them today, …maybe more me than her. Her grandparents stopped in Columbus on their way back from Florida. It is the first she has seen her grandpa since her diagnosis and first she has seen grandma since early December.
I also found a blessing or maybe knowledge I needed to find today at the support group meeting. I had questioned us going as I thought maybe Jen would just want to rest. But we went. There have been times, I hope for Jen to be excited about something or looking to go do something she has been wanting to do. I want the world for her and will move mountains to make it happen. But sometimes as I am spinning circles moving mountains, she just wants to stop, rest, and heal. For a while even small things can seem overwhelming. Reading text messages and responding, opening a card, calling her insurance company, or filling out a form. I find myself repeating to her what needs done like a mom of a teenager. I actually realized this has been ongoing for nearly a year. Which makes me wonder how long she fought low counts and fatigue. I thought before cancer this was due to laziness. After her diagnosis I thought it was a sign of her surrendering to her illness. I was wrong on both counts.” It is cancer, chemo, and healing. I needed to learn that.
So prayers tonight for a quieted cough, less fatique, and patience on my part. She will get through all this. And so will I.
Friends and family of Jennifer are having a raffle and tickets are available now.
Tickets are $10 each or 3 for $20. Winner gets $3000 in Disney Cash. Raffle will be held on July 15, 2017 at Jennifer’s Welcome Home Celebration/ Be The Match Marrow Drive.
To purchase a ticket contract Jessica Crawford 419.615.8063 , Joyce Honigford 419. 615.8062. , Tabitha Maag 419. 615.8756, Matt Honigford 419.890.9950, or Randy Honigford 419.615.7188
The raffle has been possible by generosity of these area businesses.
Gold Level Businesses ($500+ donation)
ProTec Coating Company
5500 PRO-TEC Parkway
Leipsic, OH 45856-9234
Unverferth Manufacturing Co., Inc.,
601 Broad St, Kalida, OH 45853
Silver Level Businesses ($250 donation)
Remingler Manufacturing 16394 US-224, Kalida, OH 45853
Wibby’s Sports Bar Kalida, Ohio 45853
Bronze Level Businesses ($100 donation)
Dr. Thomas Siefker D.D.S. LLC – 125 W Main St, Ottoville, OH 45876
UIS Insurance & Investment – 971 N. Perry Ottawa, OH 45875
Kahle & Associates CPA LLC 102 S Fifth Street PO Box 466 Kalida, Ohio 45853
Miller Precision Mfg. Industries, Inc 131 Progressive Dr. Box 489, Ottoville, Ohio 45876
Millies Cafe PO Box 564 141 West Canal St. Ottoville, Ohio 45876
Friend Level Businesses ( < $100 donation)
Randy Altenburger Insurance
Family Chiropractor Center, Dr. Brian Saxton DC
Maybe Day 1 yet today….
This morning a new doctor on Jen’s case came to see her. A new look at her brings a new view and a different approach. Although we were disappointed Jen didn’t start chemo yesterday, the delay may have been a blessing in disguise.
The doctor looked at her file before coming in and had a couple questions about why induction chemo and not consolidation. Because her counts remain well and because it seems as the cancer cleared up, so did the rashes, he wondered if she is actually in remission.
He shared with us there was a test that had not yet gotten back that is more specific at looking at the abnormal cells and determine if they are premature new growth cells or cancer cells. And he thought possibly some since her numbers are in average range, this very well can be the case. He also thinks possibly the rashes are leukemia in her skin and as her cancer improves, so did the skin.
So while waiting on that test result, Jen gets results of her echo this morning. Frequently, induction chemo can do heart damage. When young like Jen, the heart repairs itself over time. Jen’s heart showed some damage. Then earlier then expected, the result from her biopsy comes back. And it is a good news, bad news thing.
The good news is because the need for time to repair her heart, they think consolidation chemo is the way to go. This means five to six days in hospital and home. It is not as intensive, shorter stay, and saves the induction chemo for transplant. The bad news is she truly isn’t in remission, as the doctor had hoped.
So now with a different plan, she moves forward with 2 hours on chemo and 12 hours off and that repeats for five days. And to her delight, she gets to come home early next week and be home for her birthday.
Merry Christmas Eve!
Jen continues to improve. No fevers since Thursday evening. No oxygen for the last 24 hours. Today they are taking off the cath and heart monitor. One more day of antibotic however I convinced doctor to wait until 7pm (normally 5pm) to get it as the premed for it makes jen sleepy. The doctor said her ANC is up and he no longer hears crackles when she breathes. All positives.
Jessica Crawford and Matt Honigford are on their way down to celebrate Christmas with her dad and I.
Make today a great one! And be sure to remember the reason behind Christmas.
Love ya all!
We are definitely being blessed as Christmas draws near. All Jen’s counts are improving. Her pulse rate and respirations so much better. Her swelling going down. She is off the oxygen so she will get to shower today She had no fevers over night and slept much better and so did I. We found a place to board dogs over night this weekend! Thank you Donna Bendele at Five Star Pets.
Randy, Jess, and Matt are coming to Columbus to spend the weekend with me and Jen. Things are looking up.
Merry Christmas to all of you. We are so blessed this year with so much love and support!
Some good things today. Jen is still dragging but it is because her body is fighting. Her fevers today didn’t get as high and she was able to fight them off without Tylenol. Also her ANC is just under 1000!!!
From Mom: Sorry for the delay. It has been a busy morning and finally getting chance to sit down and give some updates.
With the help of amazing doctors, nurses, family, friends, prayers, and hugs it appears we may start making the turn we need.
In your White Blood Cells ( I call WC or White Count) there is a number they call the ANC. This is the actual part of the cell that fights off infections. That number had to be over 500 before they would ever ever consider sending her home. Today it is at 700.
Now that doesn’t mean she is packing her bags. It does mean with that number up, she is in better position to fight off the infections. It also means her bone marrow is rebuilding itself.
She was very agitated this morning. Last night they put in a line to drain some water off. And it has done a great job thus far as fluids continue to come off. When these fluids come off, she will be able to move better and moving better will over all help her mood. She wants up! Which I am going to take as a good thing. She wants to go home. So with that to work with, we can push her to do things she may have been resisting before. She is fighting.
We should start to hear some results back today about the procedure she had yesterday and this will help them target the infections better. It may take a few days for complete cultures to come back but it begins to rule out things she no longer needs.
She is still fighting fevers but that means her body is fighting. Her Oxygen level has stayed well enough she hasn’t needed to be on a vent but just a flow of air…I think they said at 4 liters..if that means anything to some of you. Her heart rate, although higher at rest then they like, didn’t increase much when they sat her at the side of the bed and moved her into a chair. And when in the chair, it comes down from @ 135 to the low 120s. The high heart rate is her fighting the fevers and the water retention.
Matt joining me did wonders. I was able to sleep knowing there was an extra set of eyes and ears through the night. I am not sure if he is able to stay tonight but I do know he does need to go back tomorrow as Heather has to work, as does Randy so he will be with the dogs. Unless we have Dex go to someone’s house and say during a few hours of transition. Stupid dogs! But goodness we do love them.
I will keep you updated as I can. Remember no news, means good news and when things go down hill, I go to panic and start to reach out to others. Me no panic = things going better.
Thank you again! You all have been so amazing to help lift me, Jen, Randy, Jess, Matt, and Heather up. We couldn’t do it without you.
Love ya all!
Tuesday December 20 – day 21
Without going into a long drawn out explanation I’ll give a short summary.
1. Procedure to look in lungs found some infection they are treating as fungal phenomenon. This requires an strong antibotic that is hard on kidneys so watching that closely
2. Water retention is a big concern and they are trying to take it off without effecting her bp
3. If she isn’t able to maintain her breathing, she will be moved to icu with possible need to vent her.
If ever I needed prayers threw this hell, I need them now. ..I can’t tell you how scary this is. She has been irritated but still ok. Me, I’m all over the place.
Monday December 19 – Day 20
Jen decided to give the cpap another try. She hasn’t liked wearing it and it has taken her awhile to trust it. Tonight she asked to try it again. She is so brave.
We compare the face mask to astronaut training. She doesn’t like the comparison. But as I explained, astronauts must train for the journeys that lie ahead.
If you have watched Big Bang Theory before, Howard Wallowits on the show was training to go to space. He was pretty whimpy. Jenn is no Wallowits!