Still in the ICU

Hey everybody,  I'll is still in the ICU. Her migraines have all but gone and her blood pressure is down with just oral medication. They still want her in there for another 24 hours just to make sure she is alright without assistance. She is nauseated a lot of the time now but they give her lots of anti nausea meds. It's been tough to just sit there as she battles something. We got the sacrament on Sunday and the missionaries gave her a blessing too. It was a great peaceful moment for the two of us.

My mom is taking off today and I can't tell her thank you enough. Her and my dad helped Emily Jack and I since the beginning of this roller-coaster and we are so grateful for my mom's help in taking care of Jack and staying up with him and bringing him to us when Emily is feeling good. Thank you so much!

Emily's mom made it up and it was a changing of the guard of sorts. We are also very very grateful for her time and sacrifice to be here when we need her most. I know that Jack is loving all the grandparent love and he is already getting big. We love him so much and it's pretty tough not being able to see him while she is in the ICU. pictures are good but they aren't the real thing.

I was able to attend a meeting with the head nutritionist, pharmacist oncologist and ICU doctor, a few students and some nurses regarding Emily. Everything was pretty positive and there was definite proof that the chemo was working and that she was getting better.

Below is a freaky picture someone drew that hangs near the cafeteria. The white thing is my pillow in the ICU lol.

Spit Party!

The Thomas household held a precautionary donor match party. It involved some mouth swabs and a bbq. Thank you guys for your willingness to help if needed (fingers crossed we don't need a transplant).

The success rate for siblings to be matches to each other is 25%. The more siblings the better the chances! Fortunately we have been blessed with many siblings!

In the ICU

Emily has been getting those headaches and migraines so they had her get a CT scan and after they got the results decided to send her to the ICU for the next day or 2 to get monitored more closely. Some people get really worried about that but the reality is that the nurse to patient ratio is 2 to 1. As opposed to where she was at that at 6 to 1. She had to have an IV put in that monitors her blood pressure in real time, which they found to be pretty high. She is on blood pressure reducing meds now that seem to be helping.

They want to have an MRI scan that will help them see the vessels more closely.

Because of the nature and condition of the other patients on the ICU floor, Jack won't be able to visit today. We are trying to find all the good we can regardless of the situation. One of those good things is how huge the flat screen TV is in here!

These are Emily's serious faces and funny faces.

Another change to treatment

After conculting with other doctors in Boston, they concluded that the best method would be to treat her symptoms as full on berkitts. Which a bone marrow transplant and radiation is not a part of. Since she had symptoms of A.L.L. as well, those two proceedures are still on the table, they just aren't set in stone as they were before.

She is responding well to treatments and recently has had some really bad migraines from the LPs  (spinal taps). Last night and this morning she has had splitting headaches that come rushing out of nowhere and she can go from zero to 60 in a matter of 5 to 10 minites. Fortunately they have lots of medication to help combat it.

Last night they gave her more stuff to keep flushing her system and so she would have to use the bathroom every 2 hours. The hard part about that for anyone who knows about migraines is that movement and light and sitting up make things a lot worse.

She is in a CT scan right now to make sure that everything is OK around her eyes and brain and that the headaches are only due to the LPs. The nurse made us laugh this morning when she put her hand on Emily's shoulder and said "Emily, you need to stop crying. It puts more pressure on your eyes and makes your migraine worse. I know it sounds silly but you need to relax and breath more." Lol  Emily followed direction and surprisingly there was more immediate relief than before.

She still has her hair but we are guessing that next week sometime is when it will start to fall out. Other than these things she is happy. Jack makes her so happy and hopeful. He brightens our day and gives us the strength and focus that we need to keep our chins up.

The last picture is of Emily as she was getting ready for her ct scan. She still has to wear a mask and the ice pack on her head helps a ton to abate the headache and keep her cool.

A light in the darkness pics

A light in the darkness

Today we decided to go with the more intense treatment. Emily and I are so scared and anxious about it all. We are scared of the unknown and and known. She will recover more quickly but it will be a tough 5 months, ending in radiation and a bone marrow transplant. The doctors say that she won't be able to have kids anymore after the treatment. We cried a lot today but then we looked over at Jack just sleeping there. So content and beautiful. He is just what we needed. The bone marrow transplant donor match kits went with Joe and Krystal today so they are planning a "spit party" for all the sibling who want to see if they match Emily.

On the brighter side, the social workers here at the hospital said that bone marrow transplants are not covered by Emily's School insurance but that THEY ARE COVERED by Idaho Medicaid! We all relaxed a bit. Otherwise it would have been a 500,000.00+ expense out of pocket.

Kristin came into town last night and her and I went and grabbed lunch today at R&R BBQ. Mom and Emily hung out for a bit and then they went and saw a movie while Emily and I spent some much needed quality time.

Pics

A new day a new challenge

Today Emily had a pretty bad migraine that had her in bed most of the morning and afternoon. She is still feeling some of the effects of her last Lumbar Puncture (spinal tap). I talked to BYU-I about her just being able to graduate and the consensus among the teachers is that it would be better if she just took "incompletes" as her grade and then over the next 6 months to a year or so, finish her school work. Maybe it's a good thing, maybe it won't work. As of right now we are up in the air. The school has been very good with the whole situation so there are no hard feelings there.

Dr. Hoda came in today and gave us some news. Turns out that they got Emily's bone marrow tests back and it became clearer to them that she has -in a way- both Burkitt's lymphoma and A.L.L.
They have been treating her for just A.L.L. which in all reality is similar to Burkitt's. Thus the drastic improvement so quickly. The question they are asking is, "Will it be enough?"

Option 1: Continue her current treatments and regiment for the next 2.5 to 3 years. She will be in the hospital for a month or so as currently planned and then come back to get treatments every month to a few months. Finishing with oral medication for the remainder of her treatment until declared "Cured".

Option 2:  4 months of intense Chemo and then another 2-4 months of outpatient work.
They will give her intense chemo for a few days, let her go home for a few weeks, then back for intense chemo for a few days, and then back home for a few weeks. and so on until the cancer is gone. Definitely the shorter route. The catches to this one are, it most likely will require a bone marrow transplant. I won't list the cost of one of these on here but if you want to look up the average cost, we will need an allogeneic transplant (meaning from a donor). Ironically enough, this is the only procedure that our current insurances won't cover lol. The other catch is that this also involves radiation which will leave Emily infertile.

Option 2 is the fastest, most effective treatment for a cure but has many obstacles.
Option 1 has a good chance of curing her but will take 3+ years and there is a higher chance she will have to start from ground zero if it ever comes back.

What is important to remember is that there is a cure for what Emily has. Deciding to cure her with option 1 or 2 or even a mixture of both is the difficult part. But she will be ok.

Needless to say, it was a very contrasted day from yesterday. We feel so loved and supported. We don't feel like we are being punished from God or that he has abandoned us at all. We have seen His hand in so many things that it is just incredible how loved and personally cared for we feel. Thank you again to all who pray and think about us and look for ways to help us out.

Jack is awesome. I can't tell you all enough how much joy he brings to Emily and I in such a dark and complicated time. Just looking at his carefree, easy going nature brings us comfort.

A new goal

Very late last night Emily's headache got so bad that she got sick in the bathroom. The headache came from her lumbar puncture type of chemotherapy. The nurses rushed in and helped her feel better with some medicine to curb the headache and help her to sleep.

Her and I slept so great and they didn't even wake us up. They just let us sleep.
We both woke up refreshed and ready for a quiet day off of procedures.

We met with Beth, Tru, Avy and Jude. They brought us some awesome water color paintings that we are in the process of hanging up! Thank you guys for those! We all ate ketchup potato chips and it was fun to watch their reactions lol. We hope to see Beth and their kids more in the future!

Joe, Krystal and Chuck came to visit too and they brought a lot of goodies from home (Canada, hence the ketchup potato chips) and they brought a smile to our faces. Jack had a great day. He was wide awake and squirmy all day but still a dream. He spit up A TON all over Emily and she was worried that he was sick. Then he smiled and fell back asleep haha that guy.

Her lob

Her lob :)

Lumbars and lobs

Later today Ben and Jackie stopped by and it was great for me to meet/talk to them. They were so fun and we look forward to playing games with them in the future.

The surprise I had planned for Emily was to have a hair stylist  (Jaclin Terry) to come cut her hair how ever she wanted it. Jaclin was so great and made Emily feel pretty and comfortable in spite of her headache due to her spinal tap. Jaclin is a friend of a friend of mine, (Stacey Hymas) from Boise. Thank you to Stacey and Jaclin for making this night just a little more special for Emily.

Joe and Krystal made it to the Wheelers tonight and we are going to meet up with them tomorrow. They brought us a bunch of stuff from our apartment for Jack and us.

The start on the ritual

Today the grabbed Emily about five minutes after I left to get the car serviced. We are learning pretty quickly that we just have to be ready at a moments notice to go have a procedure done. The hospital works great and is kind of like 100 mini businesses all working together. So we know that a particular thing will happen that day but we never know when. Which is tough some times with Jack and knowing when it's ok for him to come.

My mom has been awesome with that and so willing to do whatever. She is getting another spinal tap with some chemo today to get the bad cells away from her brain. After that she has to lay down for a few hours so she doesn't get a headache for the next few days. Joe and Krystal are coming down from Canada to visit the next few days and they are going to stop by in rexburg to pick some things up for us.

The only issue is that we have all the keys to the apartment! Fortunately, the guys from work were able to pop the door off and get it open. So thank you guys for that!

Father's day

Today was a nice father's day. This morning I picked up my dad and he headed off to Tremonton to meet my Uncle Danny who was kind enough to wake up early this morning and drive 5 hours here and 5 hours back to take dad back to Boise.

I am very grateful for my uncle and all those who have served us in the ways that we need in the moments we need. What a great brother who will drive 10 hours at the drop of a hat to help.

Emily is doing great. She's got the baby blues every now and then but the best remedy is Jack. An update from the last post, Emily has lost 9 lbs in 24 hours in excess fluids!

Sheila and Audrey stopped by on their way to Logan and gave us some really needed pick me ups from them, the Brants and my sisters. Thank you guys so much for everything you gave us. We desperately needed some super soft blankets!! We will put those to great use.

Good luck Audrey with orientation!

Jack was as great as ever and just did baby stuff by way of eating sleeping and pooping and just being dang cute. Tomorrow Emily has a lumbar puncture
And a special surprise later in the day.

Did I mention self stick?

Liquid sunshine

This morning Emily's oxygen level was lower than normal so they gave her some through a little mask thing. After some research they concluded that her bad cells were dying faster than her kidneys could handle. Fluid was starting to fill her lungs. All this caused was a little shortness of breath and being that she is monitored every 20 minutes, they fixed the problem very quickly.

They gave her a solution that would help her to use the bathroom to get rid of those fluids. 5 minutes after the solution was given at 11am until about 3pm she got rid of 6 litres of fluid! That's nearly 4 lbs! She is feeling a lot better today and more energetic.

Jack is amazing. He is just a super baby. He is taking 2 ounces every 3 hours. He hardly cries, and when he does its only for a few seconds. His skin and hair are darkening up too. We couldn't have hoped for a better son.

We also got Emily some more cute comfy clothes.