School's out, Summer trying to arrive.

Summer has come and the kids are out of school. The pace hasn't seemed to slow down.

During the Memorial Day weekend McCall played a Soccer Tournament. She and the Red Devil team finally got the monkey off their back and came home Champions after playing in the finals 3 years in a row. Great job!

Callie tried out for Level 4 team gymnastics and made it! Now that she is in level 4 she will be training to compete at locations around the Wasatch front. Her season starts September and ends around Thanksgiving. Now she will start going to the gym 3 days a week for three and a half hours, thats ten and a half hours a week! If I was going to the gym that much each week I would be Mr. Universe!

During the last week of School McCall played in a 3v3 tournament for fun and to keep her active. Last week she had soccer camp at Skyline High where the second year coach Yamil Castillo instructed the athletes. Thursday through Saturday was the Utah Glory soccer tournament. McCall played quite well and her team finished undefeated and Champions of the U14 division.

For many of us watching this last soccer tournament, the best part was having Carla be there to watch two games, including the finals. Her recovery is moving in the right direction.

Last post I wrote about Carla having CMV and a blood transfusion. Since then, the CMV tests have come back negative and she only has to take medicine for that for another week or so, then she can get rid of that pill (She was on IV med for the CMV, but switched her to pill). Ever since the last blood transfusion her counts have been improving. The biggest bummer of all for her on that transfusion day was on the way home and driving by the U2 venue at the University of Utah where people were on their way to the concert. We had tickets to see them since last year when it got canceled. Our friends Sarah and Dave were kind of enough to buy the tickets from us. If I may quote Sarah, "I'm not trying to rub it in or anything, but, it was probably the best concert I've ever been too." No comment. :)

Daily progress is really hard to chart for recovery, but if you look at it weekly, we feel that Carla is making progress. If you count helping with laundry or other chores, which I do, then we have progress. The body takes a bit of time to heal and get used to its new blood. Her 100 day milestone is coming up in July where she gets evaluated and hopefully start the reduction of the immune suppression medication.

Yesterday the kids went swimming for the first time at grandma and grandpa's condo since they relocated last fall. They said the water was warm and the pool deep. We are sure this will be the first of many days at the pool.

Thank you Jensen's, Garn's, Steven's for dinner the past few weeks. Jenny, you have been such a great friend coordinating for us. Everyone is just amazing. We cannot express enough thanks and love to everyone. I continuously think how fortunate we are to have such incredible support. We love you all.

The Hennessy's

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.