So life really has been pretty great this week, sometimes tedious, but really so great. Allistaire’s energy has continued to increase and she ‘s had lots of fun out riding bikes and running around. She’s been doing an impressive job eating and has even gained some weight. She started at 15.7 kg and was up to 16.3 on Thursday when she was weighed. On top of it all there still have been no blasts showing up which is an immense relief. We are still at an ANC (Absolute Neutrophil Count) of zero – in fact it has been 26 days at zero. Quite a while to be completely without defense.
Hence this brings us to the sad news of the day. At the exact moment that the door was open to the doctors for rounds this morning, Allistaire sneezed a huge inch sized snot bubble and Dr. Fong immediately turned the sign on the door to “Viral Precautions,” which means we’re back in isolation. I have been asking a number of times in the last week about Allistaire’s occasional cough and intermittent runny nose. I certainly don’t want to ask to be put in isolation but more than anything, I don’t want to waste time ignoring an infection of some kind that could be being treated and not delaying us further from transplant. So here we are. A nasal swab confirmed RSV this afternoon and of course we are back to having to do the much detested Ribavirin again. I am heart-sick about it all, but it is what we have to do and at least this time I know what needs to happen. Amazingly, I had the best nights of sleep I have had here yet, the past few nights. I am thankful to be going into these next five days not overly tired. We have 30 hours of Ribavirin ahead of us and days stuck in the room.
God sees fit to constantly remind me that it could be worse. I was delayed going to switch my laundry this morning, by the oh so sad face of Shannon, mom of Jaxon. We first met Jaxon, who is now a little over year and a half, about a year ago. He has Down Syndrome and AML. He has been fighting health struggles from the beginning of his wee life and today they are bringing him home with the very slim chance that he’ll make it but with the reality that they probably have days or at most weeks with him. After crying in the bathroom for a bit this afternoon, I tried to compose myself and as I walked down the hall I passed a man I knew mostly by face. I’ve seen him around quite frequently over the last year plus but just spoke with him for the first time last weekend. His daughter was born in liver failure and had a liver transplant at one year, then got Acute Lymphoblastic Leukemia and then relapsed and had a bone marrow transplant last fall. They are still here. If I have to sit next to Allistaire in the dark for six hours each day for five days with a mask over her face, then I have it better than I could.
I’m in the middle of a book that has a lot to digest. One of the main points is that we may not be able to change our circumstances, and thus in some ways are without choice or power, but the truth is we do have the choice to decide how we will respond to suffering. Realistically this is quite minor, though it sits amidst larger, more significant pain and sorrow. But regardless, I can mope around about this, and boy is it tempting because the truth is it just really sucks, but I’m asking God to help me face it with thanksgiving and confidence that He will get us through.
Today marks our 40th day in the hospital since we have returned with relapse. Tomorrow will surpass the longest stretch we’ve ever had in here before. There is no end in sight. I meditate on this: The Lord is God. The Lord is Good.
Jai: So sorry about the news. The pictures are beautiful! Praying for your strength and
Allistaire’s rapid recovery from RSV. Love you, Pops
Jai, I’m so sad with you. Thank you for all the wonderful pictures! Gayle Byrd and have been praying on the phone almost every night since last Sept., and in addition to praying for her and her about-to-be-100-years-old mom, we pray for various other friends with needs. We have been praying for you and Allistaire and your family every night since you returned to the hospital. Love you.
In these sad days for you ahead, it is comforting to know that our precious Savior is interceding daily on your behalf and for your precious daughter. It is so easy for us to question does Jesus care that we are here going through what we are going through? Oh, yes, He cares His heart is touched with your grief. He is your great high priest and nothing absolutely nothing touches your life that He has not said” was o.k.” He is holding you close and will be there to walk with you. Praying for added strength daily for you, thankful for your extra rest for what lies ahead. The pictures are so special, thanks for sharing with us. God be with you girl.
Allistaire looks so happy in the photos! So sorry though, that she has to go through RSV treatment again, but I am glad they caught it right away! I am amazed with how beautifully you are handling your time there, you are full of grace and strength, and all you do glorifies God! We are praying for your family, and want to help in any way we can. I would like to drop off some things to brighten your days next week, I can leave it at the desk. What do you ladies need? Activities for Allistaire, books, more snacks??
Oh! More RSV? I’m so sorry, especially because the isolation must be extremely difficult for both and your girlie. I will pray that she tolerates the Ribavarin well and that God would give you both peace and glimpses of Him that give you rest, even while having to stay put in an unrestful place.
So sorry to hear she’s in isolation again! 😦 But I am so encouraged by your heart’s desire to keep being thankful. I had to take my 2 1/2 year old daughter to the ER last week as she split her chin open, but the whole time I was in there, I kept thinking about you and Allistaire and the many families that spend weeks and months in the hospital rather than just a Saturday morning. Reading your updates makes me realize how much I have taken my family’s health for granted. I am so thankful you’ve allowed so many of us to peer into your heart and to walk this journey with you. We are still praying and trust that God will bring the comfort and strength your heart needs each day. And thanks too for posting pictures of your sweet girl. 🙂 She is beautiful!!
Are you reading Victor Frankl’s Man’s Search for Meaning? Sounds just like it. He developed all his thoughts about not being able to change our circumstances but having control over the way we view them while he was in a concentration camp as a young man in WWII. Very good read. Love your pictures this time,every time… we miss you in Bozeman. Perhaps you will get to have a very long spring..2 months in Seattle and then 2 months in Bozeman, because it has not gotten here yet.
Lots of love, Robin O
Oh man that RSV stinks!! I LOVE seeing the crazy, fun, sweet pictures of Allistaire! Praying for NO BLASTS to show up
! Love, Jen XXXXX
Hi jai sweetie.
Im praying for strength to get out of bed to see ur momma i hope. Weve missed her so, and get to bsf. My chemo meds. Increased this week up to 1500mg..daily.and more fatigue and sick. But, I thank Jesus for my testing and growing…… He is on joy and patience rite now. Ha,,! Jai, im praying, now for that enemy of our souls to leave now, get away from this whole situation and for Abba to remove all traces of virus in alli and anyone who needs be near her. Abba El Elyon, send a host of angels to surround alli and her fam. And ALL CREW AS NEEDED. Thank you.. Our Great Lord God end the Spirit of Comfort and Peace right now. God i / we ask this child of yours be lifted up and healed bysummer end. Please and thank you in praise and worship to YOU YASHWEH
Ps. Sorry 4 miss spelling. Hands have trouble. Also, i feel like i should say.. For you inclosure… Try to get.. Knowing God by JI Packer. If not read youll be super blessed i promise you. 🙂 do u have a snail mail address. I have much to help u by in the court of suffering. But, i cant do buttons well. Let me know by email. If u want. Your daily in my heart and prays your on so many prayer chsins of unknown brothers an sisters. Keep looking at the unseen not whst u see or the enemy wants to whisper. God has given me this word to say 4 times now… So i will
PATIENCE… AND IN UR LIFE, NOW, ONLY HE AND YOU KNOW OR WILL KNOW WHAT THAT MEANS OK IM DONE. MOW TO pray God help lift thid pain wracked body out of bed into vlothes in a hr. AMEN AND OH YES SWEET HOLY SPIRIT COME POWERFULLY THAT YOU FILL THAT WHOLE FLOOR WITH YOUR PRESCENCE OF LOVE AN PEACE. LEAD THE HURTING LOST TO JESUS OUR KING AND SAVIOUR AMEN. JOETTE CARES. AND LOVES TO PRAY FOR ANYONE.!
So sad for you. Isolation is so….isolating. A stupid way to say that, but I have a kinship with your pain. I am praying that Allistaire breeze through this and transplant will soon be in its way. Much love.
Jai. Can u download the app. Streams in the desert devotional. If so click to april 13 date. I thought the poem in there was so sweet God had me read ahead i needed to hear those words today so bad… Then i read ur blog today and i so want to share it with u an mom somehow. Maybe u can let her know! She emailed today. If your interested ofvourse. Blessed quiet night dear ones sleep in His Holy Peace. Joette
Allistaire was in my mom’s BSF class & you and her have been her prayers and thoughts daily. She directed me to the blog & I have been reading along and praying for you too. I hope soon to meet you both in person.