Update on Mary: Focusing on Small Victories

Mom had chemo this morning, the start of another round. Because this is the new round she also had a meeting with her oncologist and blood work. She got a little bit of good news - her CA-19 count was down again to 192 (from 244 last round), which means her chemo is continuing to work. Since the chemo that she is taking right now has comparatively mild side effects we are praying that it will work for as long as possible. The estimate is that it should work through the end of the year, give or take, and then she will move on to something else. For now she can continue the routine she is in, which is a huge blessing because she feels good enough to enjoy herself on most days.

Please pray that:

Mom's cancer would go away.

Mom would seize little victories and be able to find joy in the small things.

Pray that Mom and Dad would have strength as Mom fights for more time, wisdom to make good decisions regarding her medical care and their use of time, and that Mom would have more days than the doctors estimate.

Thank you for joining us on this journey and for your prayers.

The blog has been very quiet lately because Tommy has been recovering from getting his tonsils and adenoids removed. I've written probably 20 posts in my head but not had time to sit down and actually write them. I'll be back to regular form in the next week or so (hopefully).

Game Day!

And it turned out to be a very good day indeed. The boys donned their jerseys to prepare for the big day. We couldn't get the game (it would have been passed bedtime anyway), so the boys will be very excited to learn of UCLA's big win when they wake up tomorrow. Go Bruins!

Update on Mary: Recalibrating

Over the course of the last week Mom and Dad have been very busy getting second opinions from two new oncologists and one surgeon. They have been very impressed by the doctors they have seen, and the opinions they received have been very similar, which has been helpful. Unfortunately, all three doctors think that surgery is not the best option for Mom, and that her best case scenario is to continue on the chemo that she is doing now, wait for it to stop working, and then try something new. She has a few options for different things to try, and, if all goes well, she should be able to buy some more good-quality of life time. The current guesstimate is a year, give or take, all depending on how well she tolerates and responds to new chemo-therapies. Obviously we hope for more, and obviously the news that there is no real possibility of surgery is crushing. Even though it was always a very long shot, it was nice to have that little speck of light at the end of the tunnel - and now it is gone. Here's why: pancreatic cancer is a beast, and it has probably metastasized into Mom's lungs. and probably to other places that the CT and PET scans aren't picking up. While the surgeon could possibly cut out Mom's tumor and recreate the portal vein to her liver that the cancer has clogged, the operation would be extremely invasive and the recovery would take about three months. During those three months Mom could not be on chemo and this would allow all the little cancer cells inside her body that were not part of the original tumor to proliferate and start new tumors in different organs. Thus, doing the surgery would decrease her quality of life and likely shorten the length of her life. There is no reason to endure extra pain to have a shorter life, so surgery is off the table. The good news is that the oncologists mom saw have some creative ideas for new chemotherapy options once the one Mom is currently on stops being effective. It was nice to have a more optimistic timetable to work with (a year is much better than "months") and hope for. We need loads of prayer. I know you have been praying so much already, but here is our growing prayer list:

Pray for a miracle. It's always best to ask for what you really want first. God is big. He could do it. We know that He probably has a different plan, but let's ask anyway.

Pray for Mom's spirits. This has been a hard week on her. She is digesting very difficult information right now, and needs strength and hope. This fight is both physically and emotionally wearing.

Pray that she feels God's love as He cradles His child during this difficult storm. We know He is there, but it doesn't feel that way sometimes. Pray also that her digestion would pick up. She needs to eat to keep up her weight (which is stable now- yay!) and her strength, but she digests food so slowly that it is difficult to eat enough to do so.

Pray for wisdom as Mom and Dad make some big decisions about which oncologist to continue seeing, how much time Dad should take off from work, and how best to make the most of the upcoming year.

Praise God for the gift of time that we have been given thus far. Before Mom started chemotherapy she was so sick, and it has truly been a blessing for all of us to have her in better shape so that we can make memories and focus on enjoying her and spending time with her.

Thank you all so much for your prayers and for your continued commitment to loving our family. It's going to be a rough year, and we are so thankful that you are walking alongside us as we ride the ups and downs of this cancer roller-coaster. We love you and appreciate you so much.

Sickle Support

This week we attended the Sickle Cell Disease Associate of Illinois' monthly support group for the first time. I found out about SCDAI before we left for CA a few months back, but with all the rush to prepare to go and then being gone we hadn't had a chance to make a meeting yet. It was a bit daunting to make the meeting. It's about forty-five minutes away in an area of the city we aren't familiar with, and thanks to some terrible Google map directions we did get lost trying to get there, and therefore we were embarrassingly late to our first meeting. Jeff had to leave work pretty early in order for us to make it, and we had to keep the kids out passed bedtime. Also, I had a sneaking suspicion that our family might not be the norm, but, when are we ever? That said, I am so thankful that we went. The meeting was excellent, and I think that this group will be a real blessing to our family in the future.

Our original plan was to drive out to the area where the meeting was located, find a place to eat, have dinner, then go to the meeting as a family. However, Jeff got off work late, traffic was slow due to construction and rain, we got lost, and so Kenny and I went to the meeting while Jeff took the boys to get something to eat. I think that we may have looked a bit out of place. The moderator asked if I was surprised when the newborn screening came back and my husband and I found out we were carriers (white people can carry the gene for sickle cell, although it is rare). So, I shared a bit of our story. Of course we were surprised to learn that Nic had sickle cell, but we aren't carriers. The moderator asked some great questions and did not hesitate to put me, or anyone else, on the spot, and I thought it was a great tactic to get people to share more specific things.

The main topic of discussion was a problem someone was having getting the medical care that they need, and it was very sad to hear about the struggles that people with sickle cell have when they require a great deal of costly medical care but are not able to work due to frequent hospitalization/pain. Next time we will be talking about how racism affects medical care.

The meeting was also difficult. Listening to people discuss all of the medications they take to manage their symptoms and all the surgeries they have had...that's hard. I hate to think of Nic having so many of his organs removed or transplanted, or having wounds that won't heal, or having to wear a bag. It's one thing to read about that being his future in a book, and another to see people actually having to live with the problems he will potentially have. I know that it is better for us to be aware of the coming medical issues, but in some ways ignorance really is bliss.

That said, it was great to meet other caregivers of children with sickle cell disease and to meet individuals who have SCD. There was one man there with SS (Nic's type) who is 56 years old. That is amazing. He seems like a very inspiring man, not just because he is beating the odds in terms of lifespan but because he apparently has led a very active life and aspires to show other young men with SCD that they can do the same. That is the type of role model that we need for our family. The other moms were very knowledgeable about SCD and I know that I can learn a lot from their experience advocating for a child with SCD.

Happenings

It's been a very medical few weeks around here. About two weeks ago I got a letter in the mail from the IL health department informing me of the results of Nic's newborn screening. You know, the one we did in April of 2011, fifteen months ago. It turns out Nic has sickle cell disease. Good thing they were quick about getting me those results. Two days later a nurse called to check in on us. It was her job to make sure we took Nic to a doctor. Once I told her that we had she basically hung up on me. I'm pretty grateful right now that our state government is not in charge of Nic's healthcare.

They also sent me a booklet on "creating your medical home." It's all about how our lives will revolve around Nic's medical care, which I found rather depressing. My personal goal is for our lives, and Nic's to be as normal as possible while ensuring he gets the medical care he needs. Perhaps it is tomato, tomaaaato, but it still made me sad. Then, this week we went to the hospital for Nic's transcranial Doppler, and on the way Tommy asked. "Are we going to the same hospital that we go to every single day?" And I had to respond, "yes." Although to be fair everyday is an exaggeration, though we have been three times in as many weeks, so perhaps I am not succeeding in keeping our lives "normal."

The good news is that the results of the test came back "perfect," so we don't have to put Nic on any more medications. We will be doing these tests once a year around his birthday, as it is important to keep an eye on the blood vessels in his brain to prevent strokes. Strokes are far too common in children with sickle cell disease. Now he just has one more special vaccination to get and then we should be done with his regularly schedule medical maintenance for the next few months.

On to Tommy, it turns out that he has obstructive sleep apnea caused by a rather large pair of tonsils. He will be having surgery this Friday to take care of that. Hopefully it will end his habit of snoring like an old man (did you know children aren't supposed to snore? I didn't, which is why Tommy has suffered from sleep apnea for years). I'm really nervous about Tommy going under for the surgery, and sad that he is going to be in pain afterwards, but I know it is necessary. The poor child is so tired all the time, no matter how much sleep he ostensibly gets. We are hoping this will make a big difference for him. Please pray for us on Friday, for Tommy's surgery to go smoothly and for his poor mama's nerves.

Kenny's doing great right now, thankfully. I don't think I can handle yet another trip to the doctor's!

In other news, I bought twenty pounds of stone fruit two weeks ago. I wish I would have gotten more because my children are like bottomless pits for peaches and nectarines. They ate nine of the ten pounds of peaches, so to my everlasting sadness I did not get to can anything peach this year save for one batch of mixed peach/nectarine jelly. I wish my kiddos were old enough to labor in the peach fields, because I would seriously drive them to MI for some picking. Tommy could do it, but trying to keep Nic from taking one bite of everything would probably drive me crazy. I did manage to make and can a few different nectarine jams. I went for small batches so I could try a wider variety. I made low-sugar nectarine, honey nectarine, spiced nectarine, and nectarine peach jams. The spiced jam is amazing. My favorite out of the bunch, although the honey is great too. The recipe is on my Pinterest under canning.

We are slowly but surely settling into our space. I did more rearranging this week and I think I have the boy's room almost under control. We've made a few tweaks to our family room as well. It's amazing the difference having a small shelf for your keys and sunglasses can make. I never wonder where they are anymore! The kitchen is almost functional too. My biggest goal has been to change living patterns that are inefficient. For example, I had the cloth napkins stored in the family room, because the basket looked cute on the shelf. But that meant every time we wanted napkins someone had to leave the kitchen. Insanity! Now the basket is in the kitchen, turned sideways to fit, and therefore, not as decorative, but way more functional. The cleaning rag bag has also been moved to the kitchen because we have more spills there than any other room in the house. Now my biggest problem is storage. I have so many clothes in the in-between sizes that it would be crazy to get rid of because I have three boys and they are all going to need clothes, but they are taking up all of my very limited storage space. Also, I need to find a place to shove the vacuum cleaner! My motto has been "slow and steady wins the race." I am going to figure this out...someday. Perhaps by the time I do we will have more than 850 square feet to live in, perhaps...

Garlic & Horseradish Bread and Butter Pickles

I've had a recipe request for the pickles I made a few weeks back. Sorry, it takes me longer than it used to to get around to things...

The recipe is actually an adaptation of two different recipes driven by me not having the proper ingredients to make one or the other. That said, I think the hybrid is more appealing anyhow.

My "lesson learned" from this recipe is to be very careful with how you slice your pickles. I made mine a bit too thin. Also, if possible, use a mandolin slicer, it made pickle making this year so much easier/faster than last year (thanks Kev and Colleen!).

This should make about five 1 pint (500mL) jars

10 cups sliced pickling cucumbers
4 thinly sliced medium onions
1/2 cup canning salt
3 cups white vinegar
2 cups sugar
2 tbsp mustard seeds
2 tbsp prepared horseradish
1 tsp turmeric
5 garlic cloves

Combine cucumbers, onions, and salt. Mix well, cover with cold water, and let stand for 2 hours. Use a colander to rinse under cool running water and drain well.

Prepare your canner, jars and lids. Place one garlic clove in each prepared (hot) jar.

In a large stainless saucepan, combine vinegar, sugar, mustard seeds, horseradish, and turmeric. Bring to a boil over medium-high heat, stirring to dissolve sugar. Stir in cucumbers and onions and return to a boil.

Pack vegetables into each hot jar, leave a generous 1/2in of headspace. Ladle hot pickling liquid into jar to cover vegetables. Remove air bubbles, adjust headspace, wipe rims, add lids and bands.

Process your jars in waterbath: bring to a boil and boil for 10 minutes. Turn off heat, remove canner lid, and wait five minutes. Remove jars, cool, and store (if sealed). If not either refrigerate or re-process.

Update on Mary: Still Fighting

The news around here has been pretty poor lately. At Mom's last appointment with her cancer doctor he told her that it was time to start thinking of her life in terms of months. He said that usually when a tumor stops shrinking it is done shrinking, and that keeping things stable is the best we can hope for from here on out. On the one hand, we appreciate honesty and we want to be realistic about her situation, but on the other, since Mom is feeling so good and in good shape again she wants to continue to explore options to keep fighting as long as she can.

Mom's doctor did agree to refer her to a surgeon . Last time Mom and Dad met with a surgeon they were told that if the tumor shrank it could come out, but they weren't given any idea of how much it had to shrink. Since it has shrunk a bit (15%) they are going to ask again, knowing that surgery would likely carry a very high risk. The procedure is already a very risky one even in the best of circumstances, and they will be asking the surgeon to operate on a tumor close to a very delicate area. That meeting will occur on August 20. Please pray for good news (we could really use some). Pray that the surgeon will have wisdom as he evaluates Mom's scans and charts and that he will give Mom and Dad clear answers. Pray that they have the strength and courage to accept whatever he says.

Then, today at chemo Mom found out that the UCLA study she was in has been discontinued because the drug has not been found to be effective. Thankfully, whatever she has been taking has been working for her. Since she is no longer in the study she will be exploring some other chemo options. There is another drug that can be added to her chemo that has a better track record for shrinking tumors (30% of patients get shrinkage), but she has been warned that the side effects are harder to deal with. There is also the possibility of creating a different "cocktail" for her chemo with another doctor who has gotten good results for a friend of a friend, and she will be seeing this doctor next Wednesday...so Mom has some big decisions to make.

All of this bad news has taken it's toll on us. It has been especially hard on Mom (obviously). Right now she is getting a nice boost for her spirits in the form of cuddly baby Owen - my sister Katie and her husband are visiting - but after they leave things will be very quiet again. If you have been wanting to spend a few hours with Mom, she would love a visit, a lunch date, a walk on the beach, whatever, anytime after August 20th. She just needs a phone call, email, or text before you drop by, because no one likes to open the door when they are still in PJs!

So, in summary, Mom would love a visit after August 20. Please contact her before coming by so that she will be ready to see you. Please pray for Mom's spirits, for her chemo to keep working, and for wisdom as she and my Dad evaluate what her treatment will look like from here.

Thank you all for your prayers, your love, and your continued support. It has been five full months since Mom's diagnosis and she is feeling better now than she was when all this began. We are so grateful for all of you who have helped care for her (and for the rest of us) during this difficult time. God has been so gracious to us by placing you in our lives. Since we have to walk this terrible path, it is good to to it with friends by our side.

Mary with baby Owen

Summer Reading!

We barely finished our summer reading program at the library this year (in comparison, the last two summers Tommy has completed it twice). It's been a much crazier summer than usual, as you can likely imagine. The boys were very happy to get a big thing of bubbles and a new book in exchange for reading, but the real thrill was the Summer Reading Fair at the end of the program. They were so excited when they heard it would have a bounce house. Of course, come time to jump they realized that a lot of much older kids were jumping too, so Nic did not want to go in. Tommy eventually warmed to the idea and had a great time bouncing away. For the rest of us the real thrill was the snow cones. It was HOT that day. Our car thermometer said it was 100! And it was not a "dry heat."

Another 6 Months, Another Data Point: A Nic Update

Nic had his hematology appointment this week. Everything is looking good all things considered. His growth continues to be on-track, he is slightly below average for weight and slightly above for height. His iron levels are high, and his fetal hemoglobin is at 30.5, which is another drop, but not as big of a drop as last time. Hopefully it will stop dropping and level off soon. The higher the level that his fetal hemoglobin stabilizes at, the healthier he will be long-term.

The doctor explained that Nic may have won a genetic consolation prize with his fetal hemoglobin. While the basics behind sickle cell are simple - inherit two genes that together give you blood that just doesn't work properly - there are degrees of sickness even within homozygous sickle cell (what Nic has) and some people have genes that keep their body producing fetal hemoglobin at higher levels, which helps mitigate the effects of the disease (this is different than having sickle/HPFH). There are two types of fetal hemoglobin production in patients with sickle cell, fetal hemoglobin that is more clumped up vs fetal hemoglobin that is more diffuse (better). The doctor ran a test to see which kind Nic has and it came back inconclusive. So, it's one or the other but they just couldn't tell. Guess we'll be waiting another six months to find out. Story of our lives.

This week Nic will go in for his Trans-cranial Doppler. This test, which is an ultrasound of his brain, will check his blood vessels to see if he will be at high risk for childhood stroke or not. Strokes are a common complication of sickle cell disease, and one that we hope to avoid. If they determine that he is at high risk for stroke then he will have to take more medication. He is getting a higher dose of his daily penicillin now that he is two, and as of now that is the only medication that he will be on for the foreseeable future. There is a drug that was approved for use by kids with sickle cell fairly recently, but as it works to increase fetal hemoglobin (which Nic already has in good numbers) the doctor does not want Nic to take it. Like any drug it has serious potential side effects and risks, and the doctors in our practice feel that children should not be put on it if their fetal hemoglobin levels are above 20.

It's been five months since our last ER visit, and I was telling our nurse how happy I was that we haven't found ourselves there recently. Then Nic caught a summer cold. I am really really hoping it doesn't turn into something more because I hate torturing my child with needles and x-rays, parting with $100, and losing four to six hours of my life to have a doctor confirm that Nic has a virus! Or worse, accuse me of making up Nic's diagnosis (I have a beef with one of the doc's who works the ER and thinks that Nic's iron levels are too high for him to actually have sickle cell). So for those of you who keep our sweet little guy in your prayers, please pray that he will kick this cold without running a fever, and that he will continue to have high fetal hemoglobin and overall good health. We have been so fortunate that our experience with sickle cell thus far has been much easier than what many families face. It's a small victory, but it's a victory nonetheless.