A Happy Ending

I have to share the happy ending after my post yesterday. I completely melted down crying for a while, then pulled myself together to go upstairs to Ian's room and see how he was recovering. When I entered the room, there he stood - strong and smiling - with arms out to hug me while I cried some more, this time for joy! The nurse even gave us secret permission to go out for an hour and have dinner together! We walked to the closest restaurant that was open and then finished with a gelato on our way home. It was so sweet to get that extra little bonus round of time together.  He even felt good enough to bound up the 11 flights of stairs back to his hospital room. I had tried (once) to walk the stairs and thought I was going to die half way up, so I took the elevator this time thinking I'd be waiting a while for him at the top. The elevator doors opened at the 11th floor to reveal Ian there waiting for me, not even out of breath!

That's my Ian :)

I spent the night there with him last night and was able to be with him for the first round of chemotherapy this morning. All went well. The nausea isn't so bad yet. The real weakness shouldn't kick in for another week or so. Since they changed their policy on children, I'm bringing Asha tomorrow so he can continue to read Little House on the Prairie to her while he still has energy. For those of you who know the series, they are currently about half way through These Happy Golden Years. We are still looking for a caregiver but are confident there is a match out there for us. We are feeling strong and hopeful. Thank you for your prayers!  

The Waiting Room

I'm sitting in the radiology department at UCSF, waiting while the central venous catheter is being inserted into Ian's chest. Its been a couple hours. They wouldn't let me in for the procedure, so I'm watching the fish swim around in the waiting room. This is the same waiting room where I sat with Asha toddling around, anxiously awaiting my own cancer treatment here 4 years ago. The same fish tank, the same feelings swimming around in my chest. His chest x-ray earlier today was in the same room where I just had my annual thyroid ultrasound, the results of which were perfectly clear. I beat the odds with a rare and aggressive thyroid tumor the size of a russet potato. We were carried through that storm 5 years ago, and I know we will be carried through this one as well.

But still, tears are welling up and spilling out. They just told me he is being taken to his room upstairs.  I have his huge backpack here. We somehow assumed he would be returning to this waiting room to join me with his strong arms, joking through the hallways and holding hands like we had been doing all morning.  But I'm sure he is drugged, and chemo starts tomorrow, and my old Ian may not be back for a while. And I'm grieving all this. But I know he will be back, when the storm has passed. And this storm is just beginning.

Caregiver Needed: A Post from Ian

First of all, I want to thank all of you for the love, generosity and friendship that we have received. I feel like all my needs are being taken care of through the support of dear friends and family.  

Here is an example of the surprise blessings I have received. I took Asha to meet a couple friends at work this past Friday, and instead of a few there were over a hundred co-workers with cakes and balloons and flowers and gifts for the girls and cards and a significant donation collected to help cover our costs during this time. Amazing! I feel so supported that it makes me want to work for this company the rest of my life. 

When I went for the bone marrow biopsy two weeks ago, the doctor informed me that the medications I will be on will tax my liver significantly so I won't be able to drink alcohol for at least another 7 or 8 months. He was kind enough to say "starting tomorrow" - so I called up my good friend Matt to help me "Fight the Good Fight" - all 1500ml of Belgian tripel. And we worked on a bottle of Johnny Walker blue label. Bromance, pure bromance.

Whats next:

Here is a sketch of my post BMT (Bone Marrow Transplant) schedule. I'll be in the hospital until somewhere around the last week of February, then I'll have to be quarantined away from infections for 6 months (the first three months are the most critical). This means that during this time my family and any main caretakers will not be able to go to church or any social events where germs migrate. It is serious bubble time. I will be living in a seperate 3 bedroom condo in Sunnyvale for these first three months.

All of our needs have been taken care of except one missing piece: I still need a main caregiver to live with me for the months of March, April and May.  My wife will come over to cover night shifts and parts of the day, but since she has duties as a mother we need a main caregiver for me. When I come home from the hospital, I will be very weak and have a huge schedule of medicines to juggle as well as other serious medical assistance requirements.  The caregiver will be holding my life in their hands- missing even one scheduled medication could result in check mate.  I want someone who will be sharing life with me in a close way for those months.  The caregiver would need to move in with me and give up their public life for a while (insofar as they are not mingling in public where they can get sick). I am looking forward to this as a monastic period of life with a daily rhythm including contemplation, joy and exercise.

Room and board are covered plus a weekly salary.  If you or someone you know might be interested then let us know.

Below is the caregiver job description from our BMT manual:

• Provide emotional support
• Provide physical care
• care of the central venous catheter
• administering medications, both pills and injections as directed
• recording and keeping track of which medications were taken and when
• administering medication and/or fluids by intravenous pump devices
• assisting the patient with shopping
• Gathering and reporting information
• The caregiver will be given information about signs and symptoms to report to the medical team. It is important that the caregiver be able to identify changes in the patient's condition and report them promptly
• Keeping family and friends up-to-date on the patient's condition
• Maintaining a clean home environment after discharge from the hospital
• Preparing food for the patient
• Providing transportation for medical care
• Most patients require frequent visits to the outpatient clinic after discharge from the hospital. Patients should plan on 2 to 3 visits per week, lasting 3 to 6 hours each visit during the first 3 months after their BMT...Often patients have complications within the first 6 months, which require re-admission into the hospital. All patients require more frequent visits to the clinic following a hospital admission.

-Ian

PS. Some very generous friends have lent their condo to me for this time!  A lifesaver!  A gift and blessing.
PSS. Thanks for the Belgian Tripel Jacob. ;)

Good News, Hard News, and the Long Road Ahead (BMT)

This is Ian and Christy’s friend Amber again.  I spoke with them a few days ago and wanted to share a few updates—bright spots, as Christy says, first, then treatment plan details.

In true Ian form, when I asked him how he was doing he exclaimed: “Great! Well, today, great!”  He had jogged two and a half miles with his friend Alex the day before which, while less than he could do a few months ago, is not bad for a dude fighting blood cancer!

The previous couple of days he had been on lots of walks with the girls, read Little House on the Prairie with Asha and played dollies with Fiona… who just started walking and celebrated her first birthday! She is a bundle of developmental milestones and joy.  Here is a picture and video of Fiona’s first chocolate and first ice-cream for her birthday:

             

Last week Ian and Christy had a very long appointment at UCSF where they learned the details about Ian’s treatment plan over the next four to five months.  They also learned that the last chemo treatment destroyed some of the alveoli in his lungs, leaving his lung capacity at 63% (80-100% is the average for a healthy adult). This may be permanent damage, so Ian is grieving this.

The great news is that Ian’s brother is a bone-marrow match! Ian had been expecting to do 3 rounds of treatment, but since a match has been found so soon, the 2nd round of chemo will be dropped.  Who doesn't want to skip some chemo?

The bone-marrow transplant has a 10-15% mortality rate in the first 90 days.  This can be said more gently, perhaps, but it doesn’t change the statistic. The first ninety days out of the hospital are critical—if he gets an infection it could be fatal. There are two major risk factors during this time: infection and Graft vs. Host Disease (GVHD). GVHD occurs when the new immune system does not accept its new home, but attacks the new body's organs - generally skin, intestines, and liver.  To avoid this as much as possible, Ian will be on immunosuppressants while his brother's immune system is adjusting to his body, which means he will basically have no immune system during this time. If he does get an infection,  it will trigger his new immune system...which may decide to fight against Ian rather than the infection, causing more severe GVHD in addition to the infection.

Click here to read more about the risks of infection, rejection, and graft vs. host disease. There are a number of plans they need to put in place, including a quarantined and clean location for him to live for those ninety days, a 24/7 caretaker, and finances to cover all of these expenses.  It is truly a grueling amount of preparatory work. Financing the seclusion and care will be difficult. The reality is sitting heavy with them at moments. And in other moments they are just enjoying their time together and preparing for the road ahead.

Christy’s parents have returned to the bay area and will stay with Christy and the girls for the next four months.  And right now Ian and Christy are exploring caretaker solutions and looking for a suitable space for Ian to convalesce when he comes “home” in late February or early March: quiet, secluded (the risk of infection is very high), inexpensive, and as close to Christy and the girls as possible.  Some options are on the horizon via some gracious friends, they'll know more if it will work out in a few days. Please pray that a situation that meets all their needs will quickly come to pass.  To aid in your prayer, click here to learn a little more about the specs for Ian’s post-transplant needs.

And so that you know what to expect in the course of Ian’s treatment, here is a rough sketch of the plan, starting with January 29^th when Ian heads back to the hospital. 

·         5 day chemo regiment begins (Jan 30)

·         2 days to recover (Feb 5)

·         Transplant (Feb 5)

·         2.5-3.5 weeks of recovery in the hospital, waiting for bone marrow to begin producing blood (~ likely release between Feb 21 - Feb 27)

Sometime in the next week we’ll put up a post about all of the ways you can help—whether through practical means like giving blood or finances, or through prayer and moral support—you’ll get all the details soon.

Thank you for your attention and care to Ian, Christy, Asha, and Fiona in this time. Your friendship and support are an enormous blessing to them.

Warmly,

Amber

Status Update

It has been a couple of weeks since I've posted, so tonight seems like a good time to share the latest news and prayer points for those of you who are following along:

* Ian has been home for two weeks, and it is looking like we will have him home another week or so more. It has been so sweet having him here!  He has lower red blood cells than usual, so he gets worn out quickly and has to rest frequently. Other than that he is feeling pretty normal. He is actually out doing yoga with a friend tonight for the first time since his illness. I love this man. He is a fighter!

* Ian has resumed the tradition of reading Little House on the Prairie with Asha. They are currently blazing through the seventh book of the series, Little Town on the Prairie. He also took Asha out on a very special father/daughter date a few days ago. In the hospital Ian had told her about this date he was planning, and she asked if they could wear their "finest cloths".  Oh yes, he assured her they would. And here are a couple pictures to prove it:

Photo Bomb

* Even little Fiona is feeling the joy of having Ian back. She does the "Abba" (daddy) sign all day long, as if to announce the news again and again that "Abba is home!" She started walking a good number of steps within a day or two of him being here, and the ultimate sparkle in her eyes when he smiles at her is priceless.

* UCSF is pretty swamped right now. The bone marrow biopsy we have been praying about, which was supposed to happen about a week ago, is scheduled for next Tuesday. They expect to admit him and start round two of chemo shortly after that. We aren't complaining about the extra time we are getting with him! Please continue to pray for clear results from that biopsy.

* We heard today that Ian's brother is likely a match, but not his sister. They are starting round two of testing his brother's blood and he will have to fly out here for further testing then return a month or so later for the actual transplant if he is a match. Please pray he is a perfect match. Also, please pray peace and smooth travels for him - he is a very busy father of two himself and this will be quite a stretch for his already thin schedule. Please pray a red carpet of peace and blessing will spread out before Ian's brother each step of the way as he serves us in this crucial moment. 

* I am sick today. Throwing up, icky, feverish sick. Please pray I recover super fast, and that nobody else catches it.... Especially Ian. We really don't want his fragile immune system compromised and his return to the hospital to come sooner than necessary.

* Ian is still glowing. Seriously. Miraculously. He is being carried through this with a very deep, growing, shining faith. I am so thankful and encouraged, as are many others.

* I have been worn pretty thin. Sleeping troubles on and off. Anxiety levels rising and falling depending on my ultimate trust levels at the moment.  We have a long, long road ahead. Please pray I would keep my eyes fixed on the Lord, His compassionate presence with us, and His strength to fight for us. Pray I would not fear or be discouraged by the giants in the land ahead.

Thank you so much!