From the first time you enter Children’s Hospital you are inundated with people who are here to help your child. Face after face after face. It is this team approach that has been so impressive and reassuring to me. I keep trying to figure out who Allistaire’s doctor is. She doesn’t have one doctor – she has an entire posse of professionals who synergistically work to bring all the resources of science to aid in the fight for Allistaire’s life. The picture above is of the folks who do rounds each morning. Every day there is an attending doctor, a fellow (a doctor who has completed residency but who goes on to specialize further), four 1st year resident doctors, transition nurses, and staff nurses. This is “Team Monday.” Every day this group of folks come together to update one another on Allistaire’s condition and brain storm on how to best to meet her needs. The care that Allistaire is receiving is through the Seattle Cancer Care Alliance which is a collaboration between Seattle Children’s Hospital, University of Washington Medical and Fred Hutchinson. In addition to Team Monday, we have a dentist, social worker, dietitian and Oncology child life Specialist. The child life specialists have degrees in psychology/counseling etc and then complete clinical rotations. They are the folks that brought Allistaire the special duck who also has a Hickman Catheter. They are able to do play therapy with Allistaire and with Solveig and talk with me about the emotional and developmental aspects of what is going on for Allistaire and Solveig. In addition to all these folks there are frequent groups who come in to provide fun for the kids like the gingerbread house making and bring fun toys and gifts to brighten their days. I can also request a volunteer to come play with Allistaire for a two hour block while I take a shower or just need to get out for a bit. There are volunteers who push around the snack carts while you wait in the labs and out-patient clinics. Some juice or coffee and goldfish crackers can do wonders! At 2pm today I get to have a 20 minute neck and shoulder massage because someone is volunteering their time and skills to bless us caregivers/parents. Multiple times folks have come by Allistaire’s room to play their violin or other instrument and sing with her. There is an overwhelming abundance in this place that I cannot stop thanking God for.
In addition to the obvious continued prayer for the chemotherapy to search out and destroy the cancer cells, please also be praying that Allistaire’s Hickman Catheter will continue to function properly. This morning it was “sluggish” according to the nurses. They initially thought they were going to need to do an X-ray to check it’s positioning but later in the morning it was working well again. The more pressing and daily issue is Allistaire’s food intake. She basically is completely uninterested in eating. Even the things she used to eat like bunny crackers are of little interest now. The dietician said that they do not want to see her loose more than 5% of her body weight. We are trying high calorie smoothies but Allistaire is almost totally unwilling to drink them. It is very possible if this continues that she will need to get a feeding tube. I’m not excited about her being attached to one more tube but willing to do so if this is what it’ll take to provide her with the needed nutrients. Somehow I’ guessing 5 bunny crackers, 3 dried strawberries and 10 bites of egg a day just won’t cut it. Another mom that I met described her daughter who wouldn’t eat much as being an “air fern.”
Oh my gosh Jai and Sten…We have pictures that look so much like this in fact Kenzie and Allistaire even look similar at that age. As I tear up I remember those early stages of grief and pain that you must be dealing with so intensly right now…it was brutal at times but in the midst of it you aren’t alone. The team at Children’s is soooo amazing as you are already seeing. I’m so thankful you know the unchanging, steadfast God of the universe who is our ROCK when your world is getting turned upside down!
Big hugs and lots of love,
Jenn – you know your prayers and encouragement mean so much – you have been there. Hope you and little miss Kenzie are well!
Jenn – you know your encouragement mean so much because you’ve been there! Hope you and little miss Kenzie are well!
Great pictures … you continue to amaze us with your honest, frank, inspiring, extremely well written and yet cautious updates …. Please keep them coming .. We love you all
Roger & Tera
Thank you for your words of feedback and encouragement. You have been dear to us ever since I first met you at Peder and Jess’s wedding 10 years ago. We hope you have a wonderful Christmas.
Thankful to hear of all the people willing to help and support you in this time. Praying always. Jessica
Thank you Jessica for the card, stickers and awesome coloring by Elijah! It’s going on Allistaire’s wall!
Thank you for sharing all these wonderful details at the hospital. We will be praying about her eating. loving you guys!
I just want to hug these volunteers and be one of them!
Yes – I would guess the volunteers might like to be hugged but at the very least deserve hugs. I’m guessing you could be one too sister 🙂
We continue to pray for Allistaire, and more specifically her eating. I love all the pictures you post. You really can get a sense of the compassion and love the staff has for your sweet girl. I can only imagine, from a momma standpoint, how reassuring that feels for you, Jai.
Merry Christmas to you and your family. Thank you for your updates. You’re a true inspiration to us all.
I was telling Emily the other day how wonderful her friends are. Between you and Sam, I am always crying and praising the sweet Savior we are blessed to serve!
I am glad that you have the support there. God has given you the best support. I hope that you enjoyed your 20 min of relaxing today. As always you are in my prayers. MIchelle Brunner
So awesome the support and care you are getting! Such a blessing to live in an area with such great care. Glad you’re getting some mama love too:). Praying for you guys and that you are sleeping okay:)
I LOVED hearing about all the staff & the system & the process.
It sounds pretty amazing! 🙂