Okay, enough already of the doom and gloom huh? Monday was the darkest day of my life thus far, but four days later, life feels a bit lighter. Allistaire is much more joyful and has lots of goofy sweet smiles and giggles. During rounds yesterday, Sten held Allistaire and I stood on the opposite side of the circle with all the various doctors standing in between. “From a Hematology perspective….from an oncology perspective…from a FEN (Fluids, Electrolytes, Nutrition) perspective…,” on and on they go and right in the middle of the resident going through their shpeel, Allistaire says, “Mommy, I love you.” I wish you could hear her voice and see her face and see the looks on the doctor’s faces. It was too funny and so sweet.
In addition to Allistaire’s improved disposition, Sten and I have confirmed our decision to enroll Allistaire in the clinical study that will use Plerixafor in combination with high-dose Cytarabine and Etoposide. We were so happy to hear that her spinal fluid is still clean! She will begin chemo on Monday. Please continue to pray for protection against infection, minimal side effects and utter annihilation of cancer cells!
This weekend should be pretty chill. Sten and I are looking forward to having some of his old friends/coworkers from Freestone (the company he worked for in Seattle) stop by for a visit. Then Sten and I plan to head out for a few hours together. Tomorrow we will be given a four-hour pass where we can take Allistaire outside and have some fun. Because she has a zero ANC still, we will avoid people and probably go to a park for Allistaire to play and maybe have a picnic lunch. It’s supposed to be sunny and nearly 60 degrees.
I’ve a few other joys in the last week or so that I haven’t had a chance to relay until now. Just over a week ago Solveig was out for a visit and she and I had the opportunity to spend most of the day together. We had an incredible time at the zoo and saw some amazing creatures including a father and daughter orangutans playing hide-n-seek with each other, an amazing bird show with an eagle, vulture, barn owl and several falcons, and a mighty grizzly bear duo looking to capture some fish. Mostly it was just a joy to run around with Solveig and hold her hand and watch her eyes as she talks.
Lastly, my mom and I had a lovely day together last Sunday. The best part is that in my laziness, I just threw on my old grungy green fleece, some jeans and my old green Asics shoes. Then I look at mom and see that she’s wearing a green jacket and green shoes. I could change but I don’t feel like thinking about clothes and I accept the reality that we are going to look like total dorks walking around together. For breakfast we went to a bagel shop. I saw the green bagels but it didn’t occur to me the reason for their odd color. As we paid for the bagels, the man behind the counter exclaimed that he loved all our green for St. Patrick’s Day. “It’s St.Patrick’s Day?” I asked. Who knew? We went from looking ridiculous together, to super festive. I have no idea what’s going on in the world or what the date is. Everything is counted in relation to when chemo started, or how long we’ve been inpatient (which has been 27 days now). I just found out yesterday that Easter is not far off. I had no clue.
I really want to thank you all for so many prayers, so many cards and stickers and pictures and sweet gifts and texts and phone calls! We feel unbelievably loved and supported! Please know that it is a joy to receive all you are giving and please, please, do not take my utter lack of response to be ingratitude or anything of the like. I am trying to keep track of everything and will eventually get to writing thank you cards. And know, that I will likely either not return your phone calls or return them very late, hearing your voice truly lighten’s my day. It doesn’t matter so much what you say, just hearing your voice and your attempts to fumble around for words conveys immense love and it helps buoy me up and carry us along these challenging days. Much love to you all!
So good to hear you are having a few better moments, I am praying daily for all of you, I talked with JoMarie this week but just don’t have words to say for what you are going through, you are a great testimony and I know the Lord will Bless you and your family, I am praying for a miracle healing and strength as you all go through this………..Praying grace regnier
I will be praying for all of those things and am so glad to hear that Allistaire is back to her sweet self. Soak up the joy!
Beautiful girls! Glad things are a little lighter…we are still praying!!
Lovely! I’ve been praying for Solveig’s spirit during this time too, and I’m so glad you two got to spend great time together. I LOVE zoos. Thank you for sharing the good as well as the bad – I know it can be much easier to simply pour out the hard stuff and then enjoy the good with quiet gratitude, but it does US good to hear YOUR good! Praise JESUS for clean spinal fluid! May this clinical trial be a breakthrough for all such patients, with Allistaire paving and pointing the way!!
hello today dear jai,
it’s me get Joette checking on today’s news hoping to hear some good news am so thankful to actually hear an update with answered prayers we have all been crying in pray and I thank God I can just feel that things are gonna get better an better. I have the last time I played yesterday and today that thanks to El Shaddai are going to start looking up and they r. made me so happy
to read update thanks. I had reaL hard day myself so was so greatful for some relief 4 u all. Praise His Majestic Holiness. Have a great time out with wee one. Ill ask total protection over her. And you and hubby love and rejoice in the new spirit of hope. God IS going to have HIS SUPER MIRICLE WITH THE WEE ONE I KNOW IT.. MAY HIZ GLORY FILL THE WHOLE HOSPITAL. HE DID IT ONCE FOR ME WITH CANCER. EVERYONE WAS ASTONISHED HAVE MOM TELL U THE STORY ABOUG MY BONE CANCER IN ARM.
GOD WANTS EVERYONE TO PRAISE AND SING THIS…. OUR GOD IS AN AWEZOME GOD, HE REIGNS IN HEAVEN ABOVE……… GOD BLESS YOU HIS CHILDREN HE LOVES SO DEARLY.
I am so sorry to hear that you are back fighting the fight. I just came across your blog posting a couple of days ago and I am so sorry.
I read back through a few of the posts and was happy to read about the amazing doctors that are on your team. Seattle Children’s really has the best! You know, it is funny, Taylor has been in “Allistaire’s room” a few times and we have always thought about her. I am so sorry she is back. Keep fighting and stay strong.
A clinic trial saved Taylor’s life AND put her into remission in order to have a bone marrow transplant. Also, if anyone is worried about being a donor… don’t. The pain is minimal and the benefit is enormous! I’d do it again if they’d let me.
Taylor has recently transferred to the Adult side of SCCA so she doesn’t have many appointments at Childrens’ but next time we are in the area, we’d love to drop by and have a short visit. We are at SCCA a couple of times a month.
Taylor also says “hi” and that she is thinking and praying for you.
Hope you have wonderful day tomorrow. (Those 4-hour passes are so therapeutic) .
Love the pictures of Allistaire and Solveig.
Praying for protection against infection, minimal side effects and the annihilation of cancer cells!
Brenda Bethards (Taylor’s Mom)
Thankful for the bright spots along the way! Praying for you and yours. ((hugs))
Oh, I am praising God for the return of Allistaire’s giggles and smiles! I have been praying specifically for this, for her silly happiness to be part of your day, each day. I’m also so very thankful that you are no longer in isolation and that she can ride bikes and even spend some time outside with you and Sten.
Jai, you and your girls and Sten are in my thoughts and prayers daily. Thank you God!
You have beautiful children. Of course, after meeting you, I can see where they get their beauty. Solveig has grown up so much. What a beautiful head of curls she has!!! I am so thankful you were able to have special time with her. I know that must have meant so much to the both of you. Praying tomorrows four hour pass is filled with memories that will last a lifetime, much joy, warmth and most of all, rejuvenation for sweet Allistaire’s soul!!!
I will be praying on your behalf Monday as chemo starts. Lord, annihilate the cancer. Revive Allistaire’s flesh. Make her new again in you, Lord!!!
Your girls are beautiful. I am praying for your family during these trying days. Your blog has been such a blessing to my heart to see how you always end with how our God is carrying you through. He is faithful, and He is the anchor that hold us together when we go through such rugged paths. So neat to remember that He is always carrying us when we are too weak to walk alone. You always give Him praise,and that where it belongs. God bless and be with you all. Praying. M.j.
I just love you guys!! It makes my heart happy that you have been able to have some relief from the intensity of the pain. I was thinking about you while worshipping at church today. I was thinking…this is a privilege that Jai doesn’t get to experience right now. I was sad for you so it made me really glad to read that you got to have family time outside today. I think it was gorgeous and sunny just for you 🙂 !!!
We are so blessed to see you have even a few precious hours out of the hospital, with the loves of your life, It is refreshing for heart and soul, We have been praying for you at our lenten bible study,and are hoping you have been connected to someone who is able to meet some of your needs from side by side, from our church U.P.C, May the Lord continue to hold you close and may you and Allistaire feel His closeness every minute or each day.. God bless you and give you strength and peace…If you e
ever could use my daughter Tara Massena, who you have met to bring you something before she comes to work (tues thru Sat) please know she would be more than happy to do so.