Amy & Mike Davieau, John & Suz Bell
Since we’ve been slacking on the youcaring updates here is a run down of the last few days!
July 25: Transplant day! Today was overwhelmingly emotional for Lizzie and the Bells. A lot of feelings of gratitude toward the donor and anxiety about the road ahead. Much of the day felt like the culmination of the last 19 years had led to this moment in time. The transplant (which is an infusion not surgery) went remarkably well and now the process of engraftment begins.
July 26: Lizzie had a few typical post transplant issues including a fever and vomiting. Both were quickly addressed and were not a concern for the doctors.
July 27: We’ve learned chemo can do some funny things to taste buds and Lizzie is finding it hard to find things to eat that sound good. She finds Gatorade, tea and lemonade too sweat and even water tastes “weird.” The nurses explained that this is common and a lot of times post chemo people need stronger flavors.
July 28: Lizzie is doing very well and the doctors are pleased in her progress!
What that means is:
blister and rash free
major organ systems working very well
hair has not started to fall out yet
Here is what Lizzie is experiencing which is quite normal:
achy, overall not herself
slow to move, slow to do what is needed in any given situation - this is frustrating because she doesn’t feel like herself
headache... the first day after transfusion she had a migraine the medication took some time to work. She dropped in pain from a 9 (10 being the highest) to a 6.5 --- so, today, we will see where she is at.
Emotional about the process and about what it means for her.
People can realize the transplant is to CURE the anemia part.... what Diamond Blackfan IS has yet to be determined especially in Lizzie since she has NO genetic markers, no deletions, no mutations.
July 29: Lizzie continues to impress the doctors! She’s been told she’s ahead of schedule and today she was very active and seemed to be in a good mood. She cleaned up her room, did physical therapy and joked with her family. Mike and Alicia’s flight was experiencing weather delays so they switch their flight to Tuesday. It was a nice unexpected change to have them able to stay an extra night!
July 30: Lizzie got an EKG to check on her heart and all looked good! The doctors continue to keep a good eye on all major organs to make sure there are no red flags—so far they’ve been happy with what they’ve seen. The team of doctors and Lizzie’s mom, Kathy, were also able to strategize today about any potential issues and how they would be handled: emotionally, physically and mentally. Amplatz’s total person- total patient approach has been very appreciated.
Amy & Mike Davieau, John & Suz Bell
Upate from mom Kathy!
Transplant day, July 25th has come and gone, the real work is upon us. The vigilance has increased, the number of doctors in and out of the room has stayed steady, numbers upon numbers regarding her body chemistry are of constant concern - we are so thankful for these professionals who have dedicated their lives to medically fragile children.
I am sure many of you know the story of Jesus praying at the big rock begging God to let this cup pass... be it your will not mine.
How many times >>>>>HOW MANY TIMES <<<<<have I prayed for this transplant to not be the answer to Diamond Blackfan Anemia --- how many times did I not remind God how simple it was for Him to create a grain of sand, could He please create a few red blood cells for Lizzie..... Scripture is clear, if you ask for a fish God will not give you a snake.
Why!!! If God has blessed us with a house in Tucson under such EXTREME conditions why in the world would medical circumstances require us to leave Tucson in order to help Lizzie.
So many emotions come and go into leaving home for a hospital. In 2010 when were told transplant may be a very real option for Lizzie I started asking what our hospital needed in order for Lizzie to stay in Tucson to receive her transplant. I've learned much about the medical world, our children's hospital and the delicate lines of communication that must be formed in order for a strong research team in Pediatric Hematology to WANT to come to Tucson and set up real pediatric strategies in search of cures beginning is hematology but will extend far beyond Diamond Blackfan Anemia..... that would require an EXTREME MAKEOVER beyond what we could imagine.
So on July 25th a lot of things came together for our Bell Family. Things seen and unseen. To write of these things is quite emotional... over the next few days sitting by Lizzie's bedside I will work to communicate what we say in the hanging of that one bag of marrow, that one man's blood, so my kid could live.
Amy & Mike Davieau, John & Suz Bell
Update from mom Kathy!
After living with Lizzie in Tucson's University of AZ Medical Center (UAMC) for 19 years it is interesting to observe simple, odd, hospital things that differentiate between the two institutions.
UAMC has service elevators, when a family, patient, guest visits our Tucson hospital they are not competing with service equipment, small medical machines nor Fed EX mail carts.
- UAMC has a HUGE medical library, perhaps University of Minnesota does too, however, the one I've found is relatively small.... I am still looking.....
- UAMC has a diverse, absolutely AMAZING cafeteria - not that I am prejudice since Tucson sells LIZZIE LOOT COOKIES - however, there is a significant difference in food service here at University of Minnesota Medical Center (UMMC). ALL food is delicious, seriously not a bad meal ~ UAMC Tucson has variety and much bigger cafeteria/food service items, staff and VEGGIES!
- UAMC has parking waivers for family members or folks visiting the services and clinics of the hospital. Minnesota charges for these opportunities to utilize their medical services.
BOTH have amazing dedicated staff, the reception of family members, student patients is outstanding! Health care is challenging KUDOS to each institution for all their hard work in employee training and dedicated staff engagement.
Last but not least, two days in-patient, and I am looking for a soft pillow to fall into, all beautiful chairs and couches in the hospital are vinyl... finding that comfy overstuffed chair like Auntie Char's house has yet to be found.
Not at the hospital --- not at the hotel. Good thing too, think of the germs!
Alas, missing comforts of Tucson family and home ~ and LOVING Lizzie's expert medical team.
Thank you everyone for your support, could not be here without you!
Amy & Mike Davieau, John & Suz Bell
Day 1 or negative 10 in transplant lingo:
The first of many long hospital days is in the books. With a range of emotions, loads of wonderful support and the trademark Bell humor, we have made it through the day. Lizzie was joined by her mom (Kathy), dad (Mike), older brother (John), older sister (Amy) and younger sister (Alicia). The poor nursing staff had no idea what hit them when we walked through the door. :)
Today started by checking into Lizzie’s room on the Bone Marrow Transplant (BMT) floor—and her new home for the next 30-40 days. Lizzie took very little time to begin to make the room feel homey. She placed a few choice pictures on the wall, took inventory of things we still would need to grab, and her family quickly sprawled out everywhere. After that Lizzie and co. headed downstairs to begin to prep to get her Hickman. Her nurse Mary was absolutely fabulous and quickly caught on to what Lizzie liked, didn’t like and what would make her feel comfortable. Lizzie’s surgery went very well though it was followed with some pain and itching. Both were handled quickly with some Benadryl and morphine.
When Lizzie arrived in her BMT room after surgery we were introduced to the different members of her team, the features of her room, some of the processes for transplant and rules of the floor. For Kathy there were a lot of reassuring signs that made her feel more comfortable as we started the journey. First, when we walked into the room there was a stuffed animal pig on the bed, which Alicia quickly claimed as her own. Pigs are her favorite animal and today a reassuring presence for all. Later we were introduced to Amy, the child life specialist and Alicia, one of her nurses- though Alicia pronounces it Alisha. Kathy also noted that her mom would have been reassured by our morning nurse being named Mary. We felt in very good hands and like this team and room were perfect for us.
Around 8 p.m. Lizzie was administered her first round of immune suppressant drugs. The thought of a drug going into her body to kill of parts of it was a bit overwhelming for her and likely one of the harder parts of the day. It was a definite “well this has really started” moment, which was a bit heavy for all. Luckily we were quickly distracted when the nurse had us all chime in to fill out a form about Lizzie. After Kathy had answered a few questions about Lizzie incorrectly she quickly became more alert and began to interject her thoughts. Which, as most things with the Bells do, lead to John making jokes- mostly at Kathy’s expense. Soon everyone was laughing. Even Lizzie had a few jokes of her own. Noteably she answered the question “What would people be surprised to learn about you” with “That I’m actually 19!!” We certainly told enough stories to leave quite the impression on our nurse. (We’re sorry, Erica! We will try to behave tomorrow).
Lizzie is one of the most courageous and tough people I know, and today was no exception. Through the pain, anxiety and chaos she maintained a good attitude and high spirits. All of these things are so crucial to the success of her transplant. So please keep the messages, texts, instagram pictures and love coming her way. If you would like to send a card to her you can do so at the address below:
Amplatz Children’s Hospital
2450 Riverside Ave
Attn: Lizzie Bell Unit 4123
Some people have been asking what gift they can send Lizzie. One great idea is Itunes gift cards so she can purchase shows and movies to watch while she is in isolation. Though, of course, anything is very appreciated. But- keep in mind that due to germs she can not receive any live plants or flowers.
There are still many days to go and many hardships to come but we continue to be overwhelmed and humbled by the generosity and love of others. The doctors, nurses and staff at Amplatz Children’s Hospital have all been fabulous and attentive and the support from all our friends, family and complete strangers has been an invaluable blessing. As we continue on this journey the days will surely get harder but we will take with us our humor, our faith and your friendship. Now off to bed and on to day -9.
Amy & Mike Davieau, John & Suz Bell
Lizzie and Kathy have made it to Minnesota! This weekend they shared a very tearful farewell with Tucson, their family, friends and a loving community who supported them over the last 19 years. Sunday night they headed north to begin a whole new chapter, which Lizzie's 5 year old niece, Lily, has dubbed "Lizzie and the Transplant."
Now, they are getting settled in the Marriott Extended Stay near the hospital. The original plan was to stay at the Ronald McDonald house. Unfortunately, they are number 60 on the waiting list and based off of conversations with other families Kathy learned they had spent most of months if not all of their child’s treatment at this hotel. Lizzie and family will likely do the same. One great thing is that the Marriott Extended Stay has a great relationship with the local Ronald McDonald House and help children and families from nearby hospitals often. The nurses and social workers also explained that the hotel has the ability to keep the rooms clean and germ free. They filter the air, wash the bedding daily and even the cleaning products are geared towards the special needs of these children. One downside to note: Though the hospital discounted price of $69 a night is still very cheap for a suite with a kitchenette, it will add a considerable cost to already mounting bills. So, if you have Marriott points, please consider donating them!
Despite this, so far spirits are up and things are going smoothly. Lizzie has already decorated her bed, put pictures on the night stand and made herself as much at home as possible. Kathy meanwhile has been banished to the couch because Lizzie claims her snoring is simply unbearable. To add insult to injury Kathy has learned that the grocery stores in MN don't sell wine. Taking it all in strides, however, she has found solace in a cool six pack of Mikes Hard Lemonade.
On Monday Lizzie met with some of Amplatz Children's Hospital's wonderful radiology nurses. Lizzie learned more about a few of her upcoming procedures including how her new Hickman IV line will work. The details of that procedure proved too intense for this writer to hear so Lizzie promptly called her medically inclined brother-in-law, Mike, to share all the process in its entirety. (Like medical details? Check it out here: http://en.wikipedia.org/wiki/Hickman_line )
Lizzie is also having a number of tests done including MRI'S, scans, x-rays, a lot of blood work, nasal swabs and a bone marrow biopsy. Kathy notes that the volume of staff dedicated to each process and procedure associate with the transplant FAMILY, not just the patient, is enormous and appreciated. She most appreciates the “calendar of events” that is continuously updated (hourly, if needed) and printed for the family. This helps keep the families informed of all the next steps. According to Kathy, “These guys sure have perfected a chaotic ever-ever changing schedule!” And since communication is so key, this step is invaluable to the patient and their families.
During her first round of blood work, unfortunately, Lizzie showed a low hemoglobin. So, she got a transfusion on Wednesday and will 48 hours of in hospital chelation starting on Friday.
In closing, check back to this page and "like" Lizzie's facebook support page (www.facebook.com/TeamAPositive) to keep up to date with this process. The Bell family so appreciates all your prayers, support, kind words, messages, contributions and love.
As there will be enough intense updates later, this writer will end on a light note, and share that Kathy has just met Bev... the owner of an adjacent local wine bar and, now, her new best friend.