Update, ..yes a bit tardy.

Please forgive me for not updating the blog for 2 weeks!! Let me try to catch up on what is going on.

Carla has been home for 17 days. After the last post, Carla's recovery seemed to take a bit of a pause. One day she would feel well and then the next day quite fatigued and yucky. At the next doctor visit they reassured us that fatigue was quite normal for weeks following the transplant. However, along with her fatigue has been a constant feeling of nausea. This is not uncommon because of the medications and the healing of the body, but could be signs of other issues. Last week was a challenge for Carla to drink and eat.

On the day Carla was discharged, the home care nurse visited us to show us how to administer IV fluids and medicines into her trifusion port that is still part of her body. One of the medications causes the kidneys to excrete extra magnesium which needs to be replaced (electrolytes). Every day we must infuse 1 liter of fluids with magnesium thru her IV line. I guess spending all those hours at the hospital watching the nurses do their job is paying off (hmmm, second career?). The IV uses a pump which is held in a backpack with the IV fluids, so she can be mobile...no "Shelly" the IV pole at home.

At the beginning of this week (Sunday/Monday), Carla had been getting very fatigued and was still having a constant feeling of nausea. We have oral medications to help counter nausea, but it also makes you tired. Trying to battle one challenge makes the other difficult.

We had an appointment on Tuesday, which I thought was on Wednesday (should have written on the calendar, note to self DON'T ASSUME). So, after they called her to ask her where she was, she called me and let me know of the appointment and met Carla and her mom at the hospital. After drawing blood labs they said "No wonder you are tired, your red count is 22." Basically she was anemic and was needing 2 units of blood. The one hour visit turned into a 6+ hour visit. Carla's mom stayed with her while they got the blood ready and I went back to work. I was able to get back to her after the first unit was done and relieved her mom from "duty". They started the next unit and we waited. We finished up about 5:30, appointment started at 11.

While at the appointment, they changed a medication from oral to IV to be kinder on the liver function. The "med-van" came the next day to delivery more stuff. This IV med was new to us, self infusing ball. Just hook it up to the port and it goes in with no pump or gravity. You can put it in your pocket, walk around, go to the store, or whatever.

Because of Carla's symptoms of fatigue and nausea lasting so long, they had done some additional tests to check for other things on Tuesday. During her Thursday appointment, the told us she had tested positive for CMV (cytomegalovirus) and wanted to start treatment same day. CMV is not uncommon for people with suppressed immune systems and can cause nausea because it can grow in the stomach. Many of us have had it, but can be reactivated while on immune suppression drugs. "Beep-Beep", here comes the "med-van". Treatment for CMV is another IV med called Ganciclovir. When the test comes back negative two times she can stop the treatment, hopefully just a week. AND get rid of that nausea. She does four IV infusions a day at home, but sure beats being in the hospital!

Recap - For Carla, the previous week was not a great week. Since this Tuesday, she has felt better and more energy.

We appreciate all the "well-wishes" and continued support, whether it be through a card, visit, meals, offers, carpools, and your love. Thank you Nell, Emma, Grace, Jordan, Isabel for bringing over a plate of treats and seeing Carla this week. She has missed seeing you girls play. Thank you Vahl/Colleen and Anji/Wade for bringing us meals this past week, you kept us strong and healthy. Pam, Jason, Lisa, your flexibility and willingness to be with Carla and support me and the kids is very much appreciated.

We love you all.

Stayed tuned for update on McCall and Callie's activities.

Things are going well being home. Carla only took one nap today which was quite different from yesterday's restful day. We know this will be a gradual process to recovery and get back to normal daily activities.

This morning we went to the hospital to get a blood workup to see how things are going. While getting out out of the car we saw David, one of the PAs that Carla has a crush on, and Carla walked up to the clinic with men on both arms. After drawing "labs", they said things looked good, modified one medication and sent us on our way. We ran into our friend Jenny, a patient, walking the halls while we were there, and of course stopped by the nurses station to say hello. The people, patients and staff, are incredible people. We love them all.

Although Carla is recovering, she would love to hear from you, visit, email, text, card, call. Call me or Carla to plan a visit. Everyone has been so wonderful.

McCall has been so busy with soccer. She has 5 straight days of practice of games. Her last regular season game is tomorrow, then a few tournaments and summer prep for high school team tryouts. Yes, going to be a 9th grader in the fall, Freshman...YIKES!

Night in your own bed

Sleeping in your own bed is really a benefit. Carla slept really well last night. The body needs much rest after going through a big ordeal. Today Carla got a lot of rest that she normally doesn't get in the hospital. Very low key day.

Tomorrow we have a clinic visit to check the blood levels, medications and other body chemistrys.

We all are glad to have mom home.

Thank you Robert and Marjeen for dinner. I was watching Callie at gymnastics practice and was unable to thank you in person. Thank you for being great neighbors.

Home

Is it true? Did this day come? Yes. The goal to going home is not to be fully recovered, but to be well enough to be without 24 hour care and recover in your own home. You get comfortable knowing that you are just a button's push from a professional's care. I could see that little bit of anxiety of not wanting to leave too early and wanting to dash right out the door.

Home feels so good...for all of us. We still had one more thing to learn before going to bed, learn how to infuse IV fluids. A home nurse came over this evening to show us how to use the IV pump for hydration and some magnesium (one of the meds depletes it). Carla was so tired while we were getting instruction...almost feel like a mini-nurse.

Lights out for now. Good, no Great to be Home.

Thank you Debbie and Mike for dinner. Debbie, you are such a wonderful cook. McCall always raves about your food when she has dinner at your house. Also, Thank YOU for the extra car pooling you have done for us. You are such a sweetie.

Coming home

Tomorrow Carla is coming home! 32 days! Soon to be in her own bed.

The kids and I took dinner to Carla and left around 9:15. Parting was not as hard today for any of us knowing that she would be coming home tomorrow.

Today was not all good news. As I was letting people know she was coming home, one of the recently discharged patients texted me back telling me she was on her way back into the hospital. Dang it. Carla and I went in to see her before the kids and I went home. Hopefully her stay will not be long and can get her issues under control. We will visit her often.

We are very excited about Carla coming home, as is she.

This is one more step in the journey. Thank you everyone for your past, current and future support. We appreciate you all.

IV Tree losing its leaves

The IV tree is almost bare. There are no required meds hanging on the IV tree. They have been converted to oral. Only nutrition and hydration are hanging, however they are being reduced as well as Carla is eating and drinking more.

She is on the path to being discharged this week. I do not want to speculate on a day because I would get it wrong, but it SHOULD be real soon.

Carla's blood counts and chemistrys are looking good. And she is looking good too.

Thank you Amy and Keith for dinner tonight, we appreciate your kindness and time. Our good friend Sandy and her sons ran a 5k this weekend and ran in honor of Carla. I will post her picture when I get it. Thank you Sandy for the love.

Happy Mother's Day!

To all the Mothers out there, Happy Mother's Day!

Holidays and special occasion days have been a bit different while we have been working our way through treatments, procedures and recoveries. No matter how you try to keep things as "normal" as you can, they still are different. Routines change, places visited change, the people attending change, but these do not block us from living in the moment and celebrating the event.

This morning we dropped by Grandma Pam's to deliver flowers and cards. Although the visit was short, we enjoyed talking about the recent things they have done to the landscaping of their condo.

Next we went to see Carla at the hospital. She is doing very well. Many of the medications are being taken via pill and the IV tree has been slowing losing its "leaves". Coming home this week is very attainable. She was very happy to see the kids on this special day. After spending some time with Carla, we went home to get ready to go my mom's. While we were gone her parents came to visit, then she also got a visit from her Aunt Sandy, Grandpa Pete, and Uncle Bryce.

My mom thought we were going to grill some hot dogs or something basic, but Billy and I decided to get some Olive Garden soup, salad, bread sticks and some pasta from Pizza Hut. She was delighted to have Olive Garden. I love you mom.

After dinner we went home for a brief amount of time, then went back to the hospital to spend the evening with Carla. We did a walk and wheel chair rides, and then watched Freaky Friday, a mother-daughter type movie. Carla always gets a little emotional when the girls leave her in the evening. On the way out, I asked Daniel the CNA to poke his head in on her and tell its okay.

Although things are different on this Mother's Day, it really was the same, people showing their love to the special women in their lives. We love you moms.

A special shout out to my brother Jimbo in Washinton state, we love and miss you.

Engrafted!

Carla's bone marrow transplant has engrafted. This means that her neutrofil white count was above 500 for 3 days in a row and is at 1000. In basic terms it means the transplant is working and blood cells are being made. Her platelet count is nearing low normal, reds dropped slightly but typical. It was such good news today.

Our doctor told Carla to take it slow and let the body heal. She still gets quite tired during the day from time to time. He was very encouraged by her blood numbers and how she is not showing signs of Graft vs. Host (GVH)issues. Slowly she will be switching to oral meds and if progress continues could be home early next week!

Carla got out of her room for a few walks and I pushed her in the wheelchair outside...YES, I SAID OUTSIDE! Pushing a person in a wheelchair up a hill, wearing a mask with an IV pole gets a few friendly comments from passer-byers. It was a great feeling to be outside with you honey. I waited for her brother to assist me getting her back. The IV pole was not designed for travel on a bricked sidewalk.

Holli and Dave G. it was nice to visit with you for that short time. Thank you for the Cinco de Mayo dinner, we appreciate it and your kindness!

Blood level break out

When I arrived at the hospital this morning, Carla told me that her blood numbers were really good and that the nurse was getting me a print out. Indeed they were! Her white counts nearly doubled, her platelets rose 20% and reds about 10%. The neutrofils are what really excites me. They rose above the important low level of .5 (500) to 0.8 (800). We hope these numbers continue to climb at a steady rate and make her feel better all around.

This morning we went for a walk and she was feeling good. While I was at work, she told me she went for another walk and was really tired and was going to take a nap. Well deserved.

Callie had choir practice today. McCall had a soccer game, she scored a goal!

Busy bodies!!

When Carla first found out about her diagnosis and would have to go through treatment, some people described the physical demand of chemotherapy as running a marathon. Getting to the transplant has also involved a few sprints and some middle distance runs as well.

Carla, and other people going through similar challenges, would have to be classified as all around athletes. Instead of getting the luxury of preparation and planning, they get themselves to the starting line not knowing what race is being ran, and go! She gets the Gold in my book.

Her blood counts continued to rise today. Still waiting for that breakout momemt, but steady as she goes is okay too. Another roller coaster day, starting at the bottom, but feeling better at end of the day. Still having achy legs.

McCall ran in the district track meet today and did really well. Each race had an A, B, and C bracket. She ran in the B bracket, and was 1st place. She would have done very well in the A bracket too with her time. These are the two races she ran, 100 M and 4x100m relay. In the second video, she is the second runner on the back stretch. You can see her bring blaze into first before she hands off to third runner.



Thank you Carrie and Rick for bringing dinner, please come visit. I enjoyed talking to you. Roni, thanks for taking Callie and letting her play with Maya. I knew she wouldn't want to come to the track meet. :)

Counts are rising.

Wow! 3 weeks has gone by since Carla was admitted into the hospital. It seems like she's been gone much longer, we miss her being home. Based on her numbers, hopefully she will not be gone much longer.

Carla's blood counts have started to recover. As I mentioned yesterday, there were signs of change. Today, Carla's neutrofils (part of the White Blood Count) showed the first increase. These are infection fighter cells. Also, her platelet count increased on its own. This is great news!

We need the blood to keep ramping up. Each day she makes more progress to feeling better too. Yesterday was one walk. Today was two walks and at a faster pace.

After dinner, the kids and I went up to be with Carla. She took her second walk of the day with us. While Carla and I were walking, the girls could not resist the "wheels".

McCall is participating in the district track meet Monday at Cottonwood High. Should be exciting! Go Wasatch Jr.!!