Tuesday, August 31, 2010
When it rains, it pours. Literally. . . in the kitchen.
Cecily thought it was pretty exciting that rain was coming through the ceiling. She immediately wanted to call her friend Ella and tell her that it was raining inside the house. She and Caleb filled the rain catching buckets with tap water and then dumped it on the floor and mopped it up with towels. It was grand fun! By the way, there wasn't much water that came inside, not more than 1/2 gallon. But, it was so exciting for the kids.
I tell you this only because normally things, like rain in the kitchen, would make me upset and I'd worry and fuss about it. When the dripping started I looked up to the ceiling and jokingly said to Heavenly Father that, "you've got to be kidding!" I mean, seriously, we're already going through one trial, we might as well have a few more along for the ride. That way our trials won't be lonely.
So, my cousin Becky told me that in the scriptures so many verses start, "And it came to pass . . ." It never says "And it came to stay."
So, this too, shall pass.
The leaky roof will pass away and a new one will come in its place just like all of the other challenges we've had in the past.
Erin's fevers are still high and the doctors have added another antibiotic, Gentamicin. She had a blood transfusion yesterday and she is pretty happy when she's not fevering at 104 degress. If the fevers haven't stopped by Thursday then they'll do a CT scan. This too shall pass, just like the fevers and CT Scans we had last round of chemo.
In the meantime, we are enjoying being here together in our home. But it is lonely without Erin. The kids snuggled with us in bed this morning and I just wanted so badly to hear her come padding down the hallway to our room and greet us in her happy voice and join our snuggling. She is a sweetheart.
John and I went to the Temple tonight. As I was taking the kids up the street to the Shirk's home (thank you Shirk family for babysitting) Caleb asked me if I was going to the Temple to get married. I told him that I already married Daddy and then the kids and I had a good conversation about the importance of the Temple. I love my kids! I love teaching them about the wonderful plan of salvation. The gospel of Jesus Christ is a beautiful message of love! It is so peaceful in the Temple. The Temple is truly a refuge from the storm!
Monday, August 30, 2010
We had an AMAZING night nurse last night. I talked to her before bed and I was a bit frustrated to hear that she would be coming in almost every hour (or more) to check on Erin's heart rate, temperatures and to turn on/off medications and fluid on her pumps. Erin needs good sleep to let her body heal. To my amazement, both Erin and I slept so well! Our nurse was a pro (her name is Amber)! She never turned a light on and I never heard the door even open or close. It makes all the difference when we get a nurse who lets us sleep well! Erin slept from 9:30 pm all the way until 9:00 am with barely a whimper or cry.
Before Erin goes to bed she says her prayers. She has always been pretty good at saying her prayers regularly, but she never lets us help her with the words. She likes to say it by herself, and she almost always says the same little prayer.
It goes like this . . .
"Dear Father. Please help me. Amen."
She has such sweet special faith.
We've been playing the Primary Children's Songbook CD before going to bed and it really helps calm her down. Last night, before we went to bed, I laid in bed with her and we chatted a bit about Jesus and Heavenly Father and how they love her so much.
She told me, "Jesus loves Erin!"
I said, "Yes, Jesus does loves Erin. And Jesus will help you get better."
She said, "Yes, Jesus will help me."
Sunday, August 29, 2010
Dr. Barnett just came in to check on Erin. Her fever is down to around 100 F. The bacteria is in her blood stream and may or may not be growing in her central line. We hope that it doesn't start growing in her line.
Saturday, August 28, 2010
It's interesting that last night I was thinking about how easy the stay as been. Our nurse has only had to come in a handful of times a day and we've basically just been playing all day long while we wait for her counts to come up. Even though it can be boring and we get couped up here it is such an amazing feeling knowing that as soon as a fever starts we have immediate attention on getting her better. The blood cultures are watched 24 hours a day and they will take immediate action if anything grows.
The nurse just finished drawing blood from her line and Erin is falling asleep.
Erin is a bright star in everyone's day. They love to see what outfit we've invented for the day. We have fun dressing Erin up in tutus, princess dresses, fairy wings, hats covered with all the flower clips we can find, lots and lots of necklaces, her painted fingernails, and a little of mom's make-up. She's been twirling and dancing all morning long and she keeps saying, "dance with me!"
Most people have suggested that we use an air mattress in our hospital room, but we have bad luck with air mattresses (plus they take up a lot of space) so we use a 3 inch thick foam mat on top of the pull out chair in our room. We keep the mat rolled up in the corner to conserve space. It is very comfortable. By nighttime, I look forward to curling up on that foam mat.
This hospital stay we've been blessed to be in a bigger room. The bathroom is actually almost the same size as the hospital room and it doubles up nicely as an office while Erin is sleeping. This hospital room also has a built in couch. We LOVE the couch! The back folds out into a bed, and it's almost the size of a twin bed. We are so spoiled to get this room. Every hospital room should be built like this. I wonder if we can make a reservation to stay in this same room for our next stay?
Our nursing staff is very skilled and caring, and they work very well with kids. The night nurses do however, come ranging in different levels of quietness; from quiet as a mouse to disruptive like a symphony goer with a noisy candy wrapper. It seems to be that when we swap our Erin shifts we always share something about how our night nurse was. Our favorite night nurses slip in and out silently and she uses a mini LED light hung around her neck to do her duties. She opens and discards the cellophane wrappers for the saline flushes (for Erin's central line) at her desk before entering our room. The more disruptive night nurse opens the door and doesn't seem to notice it slam behind her. She turns the floor lights on so that she can see what she is doing and then she noisily opens the cellophane wrappers on the saline flushes. We have found that a little chat with the night nurse before going to bed always seems to help. It is always better to know what they expect of us and what we desire of them.
Last night I slept so well. I didn't wake until 4 am when Erin's blood pressure cuff started beeping. I slept through our amazing nurse coming in at midnight.
Friday, August 27, 2010
The morning after Erin's diagnosis we sent her into surgery with heavy hearts and buckets of heart wrenching tears. We were under the impression that Erin had the less severe, and more common, Leukemia (ALL). Only seconds before they whizzed us downstairs to surgery did we find out that she had a rare and more severe type of Leukemia (AML). Red eyed and unable to keep the tears from bursting out we inched down the crowded hallways to our room. A half hour later, with pockets full of tissues, we went downstairs to the surgery waiting room where we met up with Diana, John's youngest sister and waited for Erin to get out of surgery.
If you can believe it, we spent the next hour laughing and reminiscing about silly things Erin had done. Our gray clouds dissipated at we were able to laugh and enjoy the humors in life. "Adam fell that men might be; and men are, that they might have joy." It is most important to maintain happiness in our lives, despite our dire circumstances.
Humor is the great thing, the saving thing. The minute it crops up, all our irritation and resentments slip away, and a sunny spirit takes their place (Mark Twain).
All of our intense moments have eventually followed with a dose of humor, it's just part of how we run our lives. I am so happy. I truly am happy. I love having some one on one time with Erin. She is the third child and not many "third childs" (is that grammaticaly correct?) get so much one on one attention. It is a good lesson in motherhood to entertain my child day in and day out while being confined to one single room. It would do all of us some good to spend an entire day in one room with each of our children. It forces me to spend time together, to bond. I hope that when my kids are teenagers that we would still be able to have this type of relationship!
There are so many things in life that distract from family relationships. As I sit here looking out the window I see the hustle and bustle of the world and I wonder what everyone is doing. Erin woke from her nap and I just painted her fingernails and we did a bunch of puzzles together. Now she is watching Cinderella and her Polly Pocket Cinderella is acting along with the movie. Later today, John and the kids are coming for the weekend. It will be the first time we've all been together in two weeks. Family is everything. It is so important to love being together as a family.
Thursday, August 26, 2010
I brought down a song that Songs of Love made for us titled "Princess Erin" and we danced to it together. Songs of Love is a wonderful foundation that creates a song just for your child with a life threatening illness. You can learn more about them here. I'll have to figure out a way for you to listen to it here on the blog.
Erin's nurse, Mitch, and I changed her dressing on her central line today. Erin really tolerates her line changes so much better now. We don't have to hold her down anymore. Before Mitch came in, I told Erin that we would be changing her bandaging, and when he opened the door, she obediently laid down on the bed and put her arms up so he could get started. He was very impressed. It continually amazes me how much she understands.
It is so wonderful to be able to spend some time here with Erin. She is such a sweetheart.
Tuesday, August 24, 2010
We received some surprising news when we found out that she is on the chart for her height! We were so excited to see that she is in the 20th percentile for height. She hasn't even been on the chart since she was about 6 months old. She is a very small petite little thing. Her weight is another thing, she hasn't gained anything since being there at the hospital. Her weight hasn't dropped, it just hasn't gotten higher. I can't imagine why? She eats ice cream and pizza and cheese almost every day. Well, one of our doctors really wants us to give Erin an appetite increaser. Right now I am against giving it to her. She has some pretty thin Hughes genes and I just don't think it would be a good idea to give her something to make her eat more, maybe if she was malnourished or something. I added up the other day that we have given her 19 different medications already. We are keeping the pharmaceutical companies in business.
The blisters in her mouth have started healing and she doesn't seem bothered by them. Her ANC (fighter white blood cells) are at zero. They have been zero since Sunday. She seems pretty happy in her circumstances. She is sleeping well and she is still charming all the nurses and staff in the Immunocompromised Unit (ICS). Today she has been playing with a doll house and a tea set, making hot chocolate over and over.
When we started into round three of chemotherapy we really were concerned about how awful it would be because the chemo is 10 times stronger than before. The doctors made us feel like it was going to be so difficult. We have been so blessed to have Erin sailing happily through this difficult stage in her chemotherapy. We have felt so many miracles and blessings that have come from all of your prayers and from your faith in our Savior. He is the one that we look to. He is the healer. He not only heals our wounds, but he heals our hearts too.
Sunday, August 22, 2010
And the treasure hunt begins . . .
Friday, August 20, 2010
Erin's ANC is 600 (yesterday it was 1000). She is still coughing, but her lungs sound good.
Thursday, August 19, 2010
(1) Mail a letter or package to:
Erin H*. Room 4421
Primary Children's Medical Center
100 Mario Capecchi Drive
Salt Lake City, Utah 84113
*I left her last name off here for security reasons. If you know her last name feel free to use it on your mail to the hospital.
(2) Click on this link and send her an email in the hospital. A volunteer will bring the email to Erin.
Erin woke up during the night with a croupy cough. After oxygen and a nebulizer treatment she was back asleep by midnight. She's still coughing a little today, but her lungs sound good and her throat is not inflamed.
She and John played in the toy nook this morning. He is going to give her a sponge bath (which she very much dislikes) and then they are going to change her dressing (which she dislikes even more than the bath). I'm sure she'll be tuckered out after the sponge bath and dressing change.
I miss my little air bear. I will be going to SLC tomorrow to see her. I can't wait!
Wednesday, August 18, 2010
Tuesday, August 17, 2010
Having a child with Leukemia is a life changing event. It has been a heavy burden and a source of sadness for our family. It has also been a beautiful blessing of miracles in so many other ways. How can I say a burden can be a blessing? It depends on how we look at life and I have prayed that my eyes will be open to the many blessings that come from our struggles. It touches me to say those words. I see miracles happen every day. Many of you have brought miracles upon us. I wish I could share all of them with you.
Today Cecily and I traveled to Ogden for a flute masterclass. John met us at Weber State University and then we went to McDonald's. It was a brief little meeting and we joked about how we'd spent our anniversary at McDonald's. It was great to see him! It was a little miracle that we were able to meet up together. We miss the unity that being together brings. John is just doing incredibly well pushing through his days at the hospital. He is able to get out for walks during Erin's naps, and he does some visiting around SLC when she goes to bed at night. He said it is so wonderful to wake up each morning to Erin's sweetness. She often wakes up and looks over and says, "Oh good morning Daddy!"
Erin has been doing very well. Up until today Erin has been emotionally pretty stable. Today she was a little more frustrated than usual. Her two year old independence has been very prevalent today. It could be that she is just tired from a lack of sleep. It could be that she is starting to feel the repercussions of the chemotherapy. It could be that she is just pent up there in that hospital. John said that by bedtime he had her laughing and giggling again and she went to sleep a happy girl.
It's all about taking things one day at a time.
Monday, August 16, 2010
In her routine check-up we found out that she is growing taller, but her weight stayed the same. So, she's been ordered to drink a Pediasure a day. It is fun to see her growing taller since she has just been so small!
Today her ANC is 1400. It is so nice that it's still high, that is probably why she is so happy right now because she is still feeling good inside.
John is hanging in there at the hospital for this long stay. It's been hard for us to stay away from the hospital while we've been sick. Caleb and I are slowly getting better and we can't wait to come visit Erin. Thank you for your many prayers and thank you for checking in on us.
Saturday, August 14, 2010
Erin was moved to a bigger room in the D Pod today. She is now in room 4421. It has a pullout couch and the room is slightly bigger than most of the other rooms. It also has a fabulous view of the Salt Lake City valley. We like rooms in the D Pod because there is less foot traffic so it's quieter and the view is much better than all the other rooms.
A week before Erin's diagnosis I was driving down main street in Logan debating with myself about Obamacare. I thought about how blessed we had been to always find heath insurance and I wondered about people who had to go into extreme debt and maybe loose their house because they didn't have health insurance when a big heath catastrophe hit their lives. I thanked Heavenly Father that we had always found work with health coverage. Then, in an instant our lives changed. We were the ones with a big heath catastrophe and I am even more grateful that sometimes we had to sacrifice to have health insurance and that we have always been honest hard working people. Erin's Leukemia hit us out of the blue, we were not warned beforehand and I'm thankful that we were prepared.
Having health insurance coverage has been a humongous peace of mind. I can't imagine what it would be like to have to carry the burden of bill collectors knocking down our door. Erin's hospital stays are outrageously expensive (over $100,000 each) and my only concern is that I hope we don't reach her lifetime out of pocket maximum anytime soon.
There is another sort of "coverage" that I am grateful for. It is not an insurance that requires money or a job, but a promise to everyone. "I, the Lord, am bound when ye do what I say; but when ye do not what I say, ye have no promise." (Doctrine & Covenants 82:10) I know that if we follow our Savior's plan of salvation that we are promised eternal life. Everyone is offered this promise. It all boils down to doing what the Lord asks of us, even if it requires sacrifice. If we do it, then he is "bound" to bless us. I'm not saying that I can heal Erin by my righteousness. I am being blessed with the feelings of the Spirit and the peace of knowing that Heavenly Father is mindful of us. He has already blessed us in countless ways.
I told Erin on Wedensday that she would be going back to the hospital in 2 days and I asked her if she was okay with that. She replied, "yes." On Thursday I told her that she would be going to the hospital in one day and I asked if she was okay with that. Again, she replied, "yes." On Friday morning I told her that she would be going to the hospital that day and I asked if she was okay with that. She said, "yes." It is a beautiful blessing to have a two year old so comforted and understanding of her situation.
I am overwhelmingly thankful for your sincere prays for Erin and our family. Thank you so much for putting her name on prayer roles in various churches and Temples throughout the world. Thank you for your fasting and prayers on her behalf. We can feel the strength of your prayers and sacrifice. Thank you for the many cards, e-mails, and phone calls to which we may not reply, but are so appreciative of.
Friday, August 13, 2010
The bone marrow results came back and they were clear. Erin has 0% Leukemia cells left in her bone marrow. YAY!!!! This is what we want to hear and we are so thankful that she is at 0%.
Erin and John had a wonderful time together at the hospital. They read a lot of stories and watched a movie or two. She received her first does of ARA-C. She will have 10 doses over a period of 5 days. She will also reciev 5 doses of VP-16 over the 5 days. Last time the ARA-C was 6ml and this time it's 60ml. When she was getting the ARA-C John said that she grimaced while it was going in and that she kept rubbing her chest, otherwise she seems to be doing well. She ate a good dinner and went to bed around 8:30 pm. I am glad that she slept so well here at home so that she could store up some sleep for the hospital.
We've noticed that the skin on her fingers is starting to peel off. John asked the nurse about it today and she said that is a normal side effect of the chemo. She said she's seen kids with the skin peeling up to the wrists. We've been lotioning her hands, but she likes to pick the skin off. Niiiiice.
Thursday, August 12, 2010
Today her ANC is 900 and her platelets were 390 (400 is normal) so I'm feeling pretty good about how she is doing right now. She's so healthy and strong and I hope that will continue as she starts her Intensification round of chemo tomorrow.
I have such mixed feelings right now. Sometimes I just want to cry about how awful this round of chemo sounds (the chemo drugs will be 10 times stronger). I keep having feelings like I just want it to all disappear. I wish we could live normally like we once did. I think the times before she goes back into the hospital are always the hardest for me. I'm nervous that my oldest is starting Kindergarten amidst this really crazy time and I hope that I can be a good Mom for her as she starts school. We are trying so hard to make our lives as normals as possible for the other kids through music lessons, dance lessons, and preschool. I am happy that we have had such a wonderful time together during this little break. I'm thankful that it's warm outside and that it's sunny! I'm thankful that we've been able to spend so much time at Bear Lake away from the pressures of everyday life.
Today as our home health nurse changed Erin's dressings on her central line Cecily decided she wanted to watch. She sat curled up on the couch in her new princess blanket for most of it and a few times I saw her covering her eyes. When we were finished she came and gave Erin a huge hug and just held her as a tear rolled down her cheek. Cecily is such an amazing big sister. She is a comforter to our Little Air Bear. She is so kind and willing to do whatever she can to help Erin feel better. This morning she was watching her new birthday movie "Strawberry Shortcake" and Erin wanted to watch a Baby Einstein's movie. I told Erin she would have to wait until Cecily's movie was over, but Cecily looked up and said, "she can watch her movie if she wants to." Then Cecily put Erin's movie on for her. She is so selfless and I can see how Heavenly Father is blessing our family at this time.
Wednesday, August 11, 2010
Beautiful Bear Lake!
Caleb could live at the beach.
Tuesday, August 10, 2010
Monday (August 9)
1. I took our Little Air Bear to Primary Children's to do a follow up CT Scan of her lungs. We only had her sedated with one sedation drug (Versed) which just sort of relaxed her, but she was still able to move and talk. Last time we also used Ketamine which puts her just about all the way asleep for only 5 minutes. She gets sedated so much.
2. Her ANC came up to 1400! That was a surprise. We sat in the Hemotology/Oncology Clinic for over an hour to get the results and I was thankful that Erin was still loopy from the sedation otherwise she wouldn't have been so happy waiting there.
3. Dr. Katoua (an Oncologist) told us that the nodules on her lungs were pretty much gone. We are able to stop giving her the Meropenem (IV Antibiotic). YES! We just never get a full night's sleep when we have to give it to her at 10pm and then 6am, since the drugs run for 30 minutes and we have to turn the pump off at 10:30pm and 6:30am.
Tuesday (August 10)
1. John took Erin to Primary Children's today for her Bone Marrow Biopsy and her Spinal Tap. Her ANC is down to 900. It is normal for it to fluctuate up and down.
2. Erin is scheduled to start Chemotherapy Round #3 on Thursday. It is an Intensification Round. It will be a challenging round for her and we are not looking forward to it, nonetheless, we will charge through it.
3. We learned that Round #3 of Chemotherapy is 5 days long. They will only give her two chemotherapy drugs, VP-16 and ARA-C. This time though, she will be given TEN TIMES more the usual amount of ARA-C (something like instead of 100 ml, she'll get 1,000 ml). It will be intense and she will be really sick from it. It will kill off her bone marrow and her counts will all hover around zero for quite some time. We pray so much that she won't get a fungal or bacterial infection while she is doing this round. It is important that she stay as healthy as possible.
Sunday, August 8, 2010
We are scheduled to take her to Primary Children's on Monday for a chest CT Scan. The doctors want to see if the nodules on her lungs have gotten smaller/bigger. Then we have an appointment with our Oncologist to determine when we'll start the next round of chemotherapy. I am hoping to start it right away, like yesterday. The sooner we get started, the sooner we'll be done.
Thursday, August 5, 2010
Previously today our home health nurse told us that her ANC was 900. We were thrilled, so we took her to Bear Lake. A few hours later Primary Children's called to give us more details on her blood work and they told us that it was 400. Apparently, the secretary at Logan Regional who read the results to our home health nurse didn't know how to read the lab result. Soooo . . . 400 it is and we are gallivanting around people here. She's been pretty good at wearing her mask, but still we're taking a little risk.
Today she was running up and down the deck while it thunder stormed. We love the rain and the sound of thunder. It is so wonderful to see her running and using her little chicken legs.
Today our home health nurse changed her dressing on her central line. Erin did so well sitting relatively still. John and I sat by her, but we didn't hold her down. It seems that if she is able to just lay there that she is happier than having us restrain her. In the past we've restrained her so that she doesn't pull the tube out of her chest. She seems to understand so much more now about her central line and what it takes to take care of it.
Tuesday, August 3, 2010
We've been so tuckered out. John and I took a nap in the afternoon and the kids played all over the house like it was Christmas morning. That said, we ended up spending a lot of time also cleaning up the house like you do after Christmas morning.
Cecily reminded us that it was Family Home Evening so we gathered around the living room couches. Caleb conducted the meeting, Erin picked "popcorn popping" for our opening song and she also said the prayer. John gave a lesson on prayer and then for the activity I picked a Melissa and Doug cars puzzle for us to do. Cecily was in charge of the treat so we all shared a big box of Junior Mints. All through the Family Home Evening the kids were so wiggly and giddy and happy to do something together as a family. I love my family!
After we got the kids to bed our Home Health Nurse visited (she didn't leave until after 10:00 pm) and taught us how to do a few things for Erin's care. Here is a picture of our supplies. It's worse than when we were new parents and we would spend 15 minutes packing our diaper bag with every necessity for our little newborn. After awhile we became seasoned parents and realized we only needed to have a spare diaper tucked somewhere inconspicuous (with prayer that no one pooped while we were out). Well, now we're back to the new parent stage and have to haul some of this load whenever we go out.
Here it is in the pump. The pump is like a kids wind up toy.
John tried to shoot me with it.
Here is an alcohol pad that we use to clean her caps on her tubes
and a 10 ml syringe with Saline in it.
We use these multiple times a day to flush her line.
Erin smells like Saline.
Sunday, August 1, 2010
She and I had a wonderful time reading stories tonight. I love to read Dr. Seuss' ABC Book with her. We read it so much that she knows what words come next. When we get to the "F" page she says"fiffer feffer feff" for me. I love hearing her say it, it makes me laugh now thinking of it. When we get to the "K" page I make her say the word "kerchoo" over and over and we giggle together because it sounds so funny.
John's sister Diana stayed with Erin the last two days and the nurses had such wonderful things to say about her and how good she was with Erin. I'm so thankful that we have a wonderful supportive capable family that is able to help us through this. The kids are really excited to see Erin again. At quiet times in our home someone often comments on how they miss Erin. Cecily came to us on Friday night and cried about how she missed her little sister. It is so touching to see the love that our family has one for another.
We are waiting in anticipation for Erin's CT Scan in the morning. The doctors have ordered a chest scan to see how the nodules in her lungs are doing. Can you believe that all this time I never once asked the doctors what nodules on the lungs really even means. Sometimes there just isn't enough time for me to really understand everything that is going on. Her blood counts are really doing well. Her platelets have doubles in number, but her ANC stayed at 300. I hope to see a bigger number tomorrow. We have packed up most of her room, so they better not tell me that we're staying another day.