Day 20

Well, it's been 20 days since Ian started chemo and no rising counts yet. They bumped up a few days ago to our great delight, only to drop back down the next two days. So we continue to wait and pray.

Ian's beard started falling out just today, so we will see if the trend continues. He still has daily fevers and night sweats which we are hoping are just due to his low immune system and persistent tonsillitis. If so, these should resolve once he starts making blood again. They are injecting him every evening with neupogen, a growth factor that tells his bone marrow stem cells to divide and create more blood. Until he can make his own, he's surviving on a steady supply of blood and platelet transfusions. We highly encourage those who can to donate blood to replenish the supply.

As for the girls and I, it's been an evolving dance of strategies this past week.  Fiona had been thriving, but Asha had grown a bit disconnected and was really missing me. She cried and cried when I visited, begging me not to leave, which broke my heart. She didn't want to go home with me and leave her friend Saraya in Sacramento though, either. So we are experimenting with a compromise - Saraya came home with us yesterday and has been an amazing Mama's/Nana's helper! This way Asha has a friend (who is a super sweetheart 11 year old) and she has the comfort of home/family. 

My mom is helping with the girls on days I visit Ian, but currently I'm feeling like the girls are needing me most. If anyone wants to sign up for meals, now would be a great time as I'd like to focus on reconnecting with the girls as much as possible while I'm home.  Here's the link.

Prayer points:

* Please pray for Ian's counts to come up super fast. It's been a little discouraging the past few days. He's been in the hospital for almost 4 weeks now and he's ready to escape the IV pole and midnight medications and be done with the same unappetizing menu for every meal. The hope of him coming home for Asha's birthday seems pretty dim at this point. 

* Please pray for the girls, Asha especially. She still seems a little disconnected and I can tell there's a lot going on inside her that she isn't communicating. She's been through a lot in her little lifetime.  Fiona is as cute and bright and mischievous as ever, but she talks about death a lot and really misses Ian. 

* Please pray wisdom and strength for me as I seek to discern the delicate balance of caring for myself and supporting Ian and each of the girls each day. My heart aches with the prayer that we will come through this stronger and sweeter, closer to the Lord and to each other.

Thank you!

DLI Today!

Ian's main doctor is now back from vacation and we were informed yesterday afternoon that the DLI (infusion of his brother's T cells) will be happening today. May this super power Ian's brother's immune system to banish every last vestige of leukemia! Never, ever to return!!! That's my battle cry prayer.

Any GVHD will probably take a couple weeks to show up. We feel so grateful to have escaped unscathed last time, with only a bit of GVHD on the follicle of his big toe. Unfortunately, it seems that was not enough. Please pray for the Great Physician to guide this delicate balance of attacking the leukemia and not his body. Some forms of GVHD can be short term and handled with steroids and immunosuppressants, but some can be fatal. Some are more long term and can effect quality of life for the rest of his life. There's a lot at stake, but we are continuing to take this one day at a time.

Ian is pretty weak, as would be expected at this stage of the game.  He is losing muscle mass daily and living off of platelet and red blood transfusions. He struggles to muster enough energy to just take a shower, often he can't even do that. He sleeps a lot and is still having fevers off and on daily, keeping a steady supply of blood cultures brewing just in case there's an infection to blame. They say he has about two more weeks of this before his blood counts might return. If he starts producing blood again, that is good news. It points toward remission. Asha's birthday is on July 26th, so we are hoping and praying Ian will be home to celebrate all together.

A friend was praying and saw a picture of Ian being held by Jesus. Ian's arms were at his sides, he didn't even have strength to reach out, but Jesus just picked him up and held him. That is exactly where Ian is at right now. He doesn't have much energy to reach out, but he knows deeply that God has got him.

As for me, I'm still under the pouring bucket of God's grace. The girls remain happy clams with our friends in Sacramento. Again, I can't express how grateful we are! It's such a blessing to be by Ian's side night and day while knowing the girls are happy and cared for.  I'll leave you with some pictures that brought us joy from this last week: the girls shucking and eating fresh corn, Fiona gathering mint for "Papa Jacob's" morning tea, and some of Chrys's beautiful henna:

Chemo Completed

Just wanted to check in for a quick update. Ian finished his last dose of chemo last night and the cumulative effects are definitely kicking in. He has slept most of the past two days, feeling very weak and low energy.  His liver counts go up and down. I'm thankful they are going down as well as up, and the doctors don't seem too concerned. The DLI is scheduled to happen in 5 days. That is the wild card right now, as they are planning to give him his brother's T cells until he experiences GVHD (graft vs. host disease - which is the only way to know they may have achieved GVL - graft vs. leukemia). The girls are still playing happily in Sacramento, though starting to miss us. God bless our amazing friends who are taking such good care of them.  Any pictures of Ian right now would be too depressing, so I'll leave you with one of Asha yesterday. That smile is priceless!!!

Joy and Thanksgiving

It hasn't been easy, but Amazing Grace continues to pour down. Last night was day 3 of the 5 days of chemo, and his fevers lifted the very night his chemo began. What a relief!  The chemo causes him to sweat profusely so he must change his poison drenched shirts again and again during and after treatment, making a nice pile of hazardous material laundry for yours truly, but the nausea is mild and he is eating regularly. Please pray protection for his liver, which is the main reason why they were avoiding this stronger chemo until it became the only option. His liver counts are going up, but they aren't too concerned at present as this is normal for the treatment.  It may take another two weeks for hair loss and other lovely side effects to pop up, but we are continuing to take it day by day and refusing to worry about tomorrow. As Ian keeps saying, "today is a pretty good day" and so we are thankful.

I have been so blessed to be by Ian's side throughout this treatment. When I was commuting back and forth, I'd get a pounding headache the moment I drove away from the hospital and it wouldn't lift until I was back en route to UCSF.  This did not make for a very happy mama with two emotionally fragile, intense, energetic, loud and talkative little people. The girls are still in Sacramento, and our dear friends have offered to keep them there as long as they are content. Asha has requested two months. They are in heaven, wrapped in love and picking fresh blueberries and blackberries and mulberries and gathering fresh eggs and playing with friends, dogs, horses and ladybugs. WAY better than being quarantined to our third floor apartment condo. We are sent a steady stream of texts, pictures and videos keeping us up to date on their cuteness and shenanigans. I can't express the huge relief and JOY that Ian and I feel for this amazing situation! I'll conclude with some of the pictures that make us smile with big thankful hearts:

Fiona picking blueberries for the first morning's waffles:

Chemo begins

Ian has a bed on 11 Long! He started chemo last night. Dear friends have taken the girls for a few days so I can be by Ian's side  I'm feeling thankful and hopeful. I think those buckets of grace are pouring down... Thank you for all the prayers!

Update

We are still unsure of the tonsil issue but one thing is clear, his disease is moving very fast right now. Leukemia blasts jumped from a steady 5% in his peripheral blood to 13% overnight. Not good. We are waiting for a bed in 11Long to open up and hopefully start a stronger regiment of chemo there tonight. This means at least another month in the hospital during treatment and recovery. It also means jumping into chemo while he still has this spreading throat infection and miserably constant high fevers. Tylenol will take the fever down a bit enough for him to come out from hiding under the blanket to eat a little and feel human again. 

The plan is to give 5 days of chemo and then give the DLI (his brother's T cells) a few days after. The chemo needs to destroy enough of the disease (preferably 90%) for the DLI to be able to work. 

Thank you for your prayers. 

Scary News, Please Pray

Please surround us with prayer. The doctors are worried. They are concerned it may be leukemia presenting in the lymph node of his tonsil and are pursuing a fine needle biopsy of it if possible. They have found no trace of any virus in his system and the big gun antibiotics haven't helped, it is only getting worse and fevers continue. They think it may be the leukemia progressing. He is getting another bone marrow biopsy right now as I type this. They will assess where he is at and decide from there what to do. 

There are very few people with high risk AML who survive as long as Ian has. It is a sort of "uncharted waters" as far as the research goes, so they say we are relying on the experience and creativity of the doctors. Fortunately, his main doctor is one of the best. Unfortunately, he is on vacation for the next few weeks. Please, please pray for wisdom for the Nurse Practioner who knows his case best (besides his main doc who is gone) and the other doctors who are on his team. 

Ian is hanging in there. He has post nasal drip that combines with his massively swollen throat to create a lot of gagging, nausea and vomiting. He hasn't eaten or kept much food down. He still can shoot me a twinkly smile to melt my heart, though. 

Honestly, I am heartbroken and scared. I've cried and cried the past two days. I want to be strong for Ian and the girls but I feel like a sad mess. All my strength and hope feels far away. I need a bucket full of grace to pour down on me. We need your prayers more than ever right now...

Infection continues

Quick update. All treatment is on hold because of this infection in his throat and it has been getting progressively worse every day. They wanted to give him antibodies to help him fight it, but his fever was so high (103) that they were concerned they wouldn't be able to tell if he's having an adverse reaction to it or not. They just decided to give it to him anyways. Please pray Ian takes a quick turn for healing and never ever turns back... 

Throat Infection

Ian had a sore throat yesterday that grew into an infection progressively worse overnight in spite of big gun antibiotics. They are concerned about a possible abscess in his throat that needs to be drained. He is in for a lot of pokes and prods and scans today as they try to assess what's going on. Without an immune system to keep them in check, infections can move crazy fast. With a grand total of about 3 hours sleep that didn't begin until 6am, he is exhausted and to be honest quite miserable. All chemo and treatment is called off for now until this infection clears up. Thank you for continued prayers...

Back in the Hospital

Today was the first day of Ian's second round of chemo. A couple hours after returning home, he started running a fever and having chest/breathing pain - all symptoms requiring immediate ER. Nana came to the rescue for a second round of watching the kids today while I took Ian back to UCSF. The other symptoms are gone now but fever continues, as well as low blood pressure, so he will be in the hospital for at least another 48 hours. Please pray this is nothing serious, for wisdom for the doctors here, for protection as he's in the germy ER for a good while until a bed opens up in the main hospital, and also strength for my mom who is 73 and doing double duty.