June 29, 2013

Catching Up

Wow. I think I could win the title of world's worst blogger! I'm so sorry I haven't updated here in ages. I update the blog FaceBook page, as well as InstaGram and twitter, daily but have sadly neglected the blog.

So here is a catch up post on Will and his recovery! I'm going to do bullet points to help keep my thoughts straight!

*Today is day +17 and we are still in the hospital (no surprise there). I'm guessing we will be here for probably 2 more weeks. As of today Will has still not engrafted. Typically, engraftment occurs between days 14-21 post transplant. As of now, there is no way Will will engraft within that window of time. In order to be officially engrafted, Will's ANC must be above 500 for three consecutive days. Will's ANC was a measly 20 today (0.02 on his lab paperwork) so we've got a ways to go. If we do not see his ANC increasing by Monday (day +19) we will start a drug called GCSF. GCSF is a white blood cell stimulant that will force his marrow to create white blood cells which will increase his ANC since the ANC is a white blood cell component. Receiving GCSF is pretty common for BMT patients (Kate received it) and we are hoping it is the boost Will's new cells need to start taking over and multiplying!

*The first engraftment study will be sent off on Monday. This is a blood test that looks at the DNA of a sample of blood cells and compares them to Will's DNA and his donor's DNA. It will let us know what percentage of donor cells are currently present. We are obviously hoping for a very high percentage of donor cells! Will will probably have a bone marrow biopsy within the next week to see how "full" his marrow is. As his donor cells begin to take over, and produce healthy blood cells, Will's bone marrow will start filling up and looking healthy!

*Will has started on stronger antibiotics due to red blood cells in his urine. There is a chance that the RBCs are present due to the BK virus so he was started on these antibiotics until we receive the viral study from his urine sample. Will's doctors are being extra cautious with any type of kidney/ urine issue given his history of kidney reflux and UTIs.

*TPN and lipids (IV nutrition and fat) are still being given 18 hours a day. Will has not been able to keep anything down for over a week now which resulted in his nutritionist increasing his TPN from 12 to 18 hours a day. We are hoping that Will starts to eat again this week. As soon as he is consuming enough calories by mouth, we will decrease his TPN again. We are also hoping that we can completely wean him from TPN before we head home. However, I realize there is a chance he will come home on TPN - I just hope he isn't on it as long as Kate was (Kate was on TPN for nearly 80 days).

*After two very hard days (day +12 and day +13) filled with lots of crying, minimal sleeping, tons of fussing, lots of vomiting, and extreme discomfort, Will turned a corner and has had great days since Wednesday! His energy levels are back to normal and he is so busy running all around the BMT unit! He even spent time pushing a toy grocery buggy (that was filled with weights) around the floor! It's so great to see him back to his happy go lucky self! I'm hoping this boost of energy is a sign that his new cells are starting to take over.

*His mucositis appears to be healing. One of Will's doctors believes that we haven't seen engraftment yet because his new cells started fighting off his awful mucositis first. Since we are seeing an improvement on the mucositis front, we are now hoping all of those new cells settle into Will's marrow and start their official job of making new, healthy blood cells!

*Will is still receiving platelets and red blood on a very regular basis. We are having issues with platelet availability. Will is CMV negative which means he needs to receive CMV negative blood product. Apparently this makes things more difficult. On Thursday there were literally no compatible platelets in the entire city of Houston. We had to bring platelets in from north of Dallas. If anyone in the Houston area is B+ and willing to donate platelets for Will, please email me! There is no way to know your CMV status until after you donate but if you are not a match for Will, your platelets will go to another person in need. Alex was donating for Will but his CMV status converted last week (from CMV neg to CMV pos) and he is no longer a match for Will.

*Kate flew to Mississippi last week with her Bebe and is having an absolute blast! We sure do miss her but I am so glad she is having some fun with all of our Mississippi family!

I promise to get better at keeping the blog updated! Hopefully I will have good news in the next few days about engrafting and such!! And hopefully we will start doing things to prepare Will to go home. I know one of the biggest boxes to check is taking oral meds. This is a HUGE struggle for Will right now as he cannot keep anything down. So we would appreciate thoughts and prayers for not only engrafting, but for Will's ability to start taking medication by mouth so we can prepare for the next phase of his recovery!

June 20, 2013

Bald is Beautiful...err...Handsome!

We knew going into this process that Will would lose his hair. Some kids don't lose all of their hair whereas others go completely bald. Regardless, hair loss is inevitable.

We started noticing Will's hair loss Monday evening and by Tuesday is was out of control. I'm talking huge clumps of hair falling out. His room was covered in hair. We had hair in our eyes, in our mouths, tickling our noses. It was a huge mess. Will woke up from his nap and all of the hair you see in my hand was hanging out in his rock n play (where he napped).

Will was blessed with a beautiful head of thick hair. Despite what appeared to be tons of hair loss, he still had SO much hair left on his sweet head. Because of this, Alex and I made the decision to shave his head in hopes of making the "shedding" process less messy. Will was also starting to gag on hair while he was sleeping as it was falling into his mouth. That only made his already bad nausea even worse.

Yesterday afternoon a lady from the Texas Children's Beauty Shop came down to our room and gave Will his first haircut! Will did amazing and watched Mickey while she buzzed away his beautiful hair. I, however, cried ugly tears throughout the entire thing. Something about seeing your child lose their hair because of nasty drugs is just not fun.

I have always dreamed of my kids first haircuts happening at the Barber Shop on Main Street USA in Disney World. I never expected my first experience with having my child's hair cut would be in a hospital. (Kate has never had a hair cut so this was my first time experiencing one of my kids having their hair cut.)

But the Lord had other plans for our family. He knew that this week would be the week extra counting was needed! He knew this week would be the week that the number of hairs on Will's precious head would start to decrease. He knew this and He knows when the number of healthy cells in his body will begin to multiply and flourish.

I am trusting in the Lord's plan, attempting to not be afraid of the journey ahead, and kissing the most precious bald head I have ever seen!

June 19, 2013

What's Next?

Over the past week I've have several people ask questions/ make statements about Will's future and next steps. I've heard everything from "Will is all healed and will go home now" to "how long will y'all be in the hospital?". Basically, people what to know the next steps.

While filtering through all of these questions, I've come to the realization that people are a bit confused about the bone marrow transplant process and recovery. While BMT recovery is second nature to me, it just isn't something most people know about so I thought I would help people understand a bit more about what Will will be facing in the coming months.

First off, I want to point out that the transplant was the easy part. Receiving his new cells last week did not cure him. It did not complete the bone marrow transplant process. It did not make everything all better.

Last Wednesday was simply the beginning of Will's fight for life.

Yes his chemo was hard on his body but what he is facing over the next year is even harder.

As of now, we are waiting for Will's new cells to engraft. This typically takes 14-21 days post transplant. If he has not engrafted by day +30, the transplant is deemed a failure and we will start all over again with chemo and a second transplant. While I do not even want to entertain that thought, it is a possibility that we have to keep in the back of our minds as it does happen. Kate's friend Colt dealt with this and had back to back transplants due to his first not working.

Engrafting occurs when a patient has an ANC (absolute neutrophil count) greater than 500 (or 0.50) for three consecutive days. The chemotherapy Will received completely depletes the bone marrow. This means Will's ANC should theoretically drop to 0 before it begins to increase. I say theoretically because some patients never truly reach and ANC of 0.00 but get pretty low. As of today Will's ANC is 0.09 (which is considered 90) and I am expecting it to drop a bit more before we see any upward movement.

Low white cell count/ low ANC means a patient does not have the ability to fight off infection. Because of this Will is on several prophylactic medications (antibiotics, antivirals, antifungals) to hopefully prevent infection. Will will remain on these medications for months post transplant.

Since the goal of Will's chemotherapy regime was to completely deplete his bone marrow, Will is also facing low red blood cell and platelet counts. He is being supported via platelet and RBC transfusions. Platelet transfusions are given when his platelet count drops below 20 and red blood cells are given when his hemoglobin falls below 8. Right now Will is getting RBCs about every 3rd day and platelets every 2-3 days.

On top of the blood related side effects of chemo, Will is also dealing with something called mucositis. Mucositis is the inflammation and ulceration of the mucous membranes lining the GI tract. As of now, Will has open sore in his mouth and down his throat which is causing him lots of pain as well as causing him to vomit blood regularly. Breakdown in the diaper area is also a common side effect of mucositis but as of now Will is not experiencing this. As a patient's ANC plummets, their mucositis gets worse. We are hoping that Will will start getting some relief when his counts start going back up.

The chemotherapy Will's received also destroyed his immune system. Because of this he will receive IVIG on an as needed basis until his body can start producing antibodies again. Will is also on immunosuppressive medications in order to decrease the risk of graft versus host disease. While these medications are necessary for his body to accept his new cells, and fully recover, they put him at a higher risk for developing infection (which could be potentially life threatening).

Because of the lack of immune system, Will will be on isolation as soon as he is discharged from this hospital. This means he will literally only leave our house to go to doctor's appointments three times a week. It also means that we will not allow people inside of our home for at least 8 months due to the risk of germs/ infection.

There are other possible complications (infection, liver issues, graft verses host, kidney issues, lung issues, blood pressure issues) that can spring up at any point post transplant. They typically appear within the first 100 days post transplant but major organ issues can occur as far as a year out. Those of you that followed Kate's journey may remember the kidney issues she developed 4 months post transplant.

As far as discharge goes, that is not even on our radar right now. Kate was in the hospital or 40+ days and I am expecting a similar time frame for Will. We've been here 17 days so far and I'm certain we have several more weeks to go!

We are hoping and praying that Will can avoid many of these scary complications but are realistic and know that avoiding complications and re-hospitalization is nearly impossible for BMT patients.

So as y'all can see, Will is very far from being deemed healthy. Even once his cells have engrafted he will still have many mountains to climb before we can claim his transplant a success. We've got months of worrying, praying, and hoping that these new cells will be Will's answer to a living a long life!

I hope this helps y'all better understand the BMT recovery process and if anyone has any specific questions feel free to leave them in the comment section and I will try my best to answer them this week!

June 18, 2013

Transplant Day!

Today is officially day +6 and Will is having a pretty hard time. I hope to be caught up with what's been going on over the past week by the end of this week but for now we are asking for prayers for comfort for Will. He is battling mucousitis (the worst being in his throat, esophagus right now) which has him very miserable.

Last Wednesday, June 12, was Will's transplant! His cells arrived in Houston the night before and spend hours in the processing lab. Will and his donor are different blood types (Kate and Lance were also different blood types!) so all of the red cells had to be removed from the marrow before Will could receive it. We were expecting a 1pm transplant time but, things ran a bit behind that day!

Wednesday morning Kate was able to visit for a little while! We broke the visitation rules (only two people total by a patients bedside) so that we could get a family picture of the big day! Thankfully the nurses allowed us to get a picture before Alex left Wills room!

Will has all new toys in his room and Kate was absolutely amazed when she walked in and saw them all! She kept saying "oh my bubba you have so much cool stuff here! Yet's pay wif it all!" So they did just that!

Ashley (the owner of SheShe Made) sent Kate a special transplant day outfit! I absolutely adore it and love that Kate was able to show her support for bubba!

Before Kate left, she gave Will one last hug and kiss and told him to be brave. She has been so sweet to him and is so concerned about her brother. Always asking how his ouchie is, loving on him, and telling him he will get all better! They have such a special bond.

While we waited for Will's cells to arrive on the floor we took lots of pictures!! He was in a great mood which made the wait much easier.

Right before Will received his premeds he got sick to his stomach which resulted in an outfit change. Thankfully I had lots of green packed so he was still able to wear his green!

As soon as his premeds started (Benadryl, Tylenol, and something else I believe), Will passed out and ended up sleeping through the entire transplant! As I've mentioned before, a bone marrow transplant is similar to a blood or platelet transfusion so it occurred in his room.

The first thing I noticed when I saw the bag of cells was how light colored they were. Apparently there is a new technique used to process/ remove red cells that was not used in 2011 when Kate received her cells. This new process allows for way more red cells to be removed from the marrow! We had wonderful nurses present for Will's transplant. Tania and Lauren are fantastic and I am so thankful they were able to be the ones to give Will his new cells! Will loves all of his nurses but I think Miss Tania holds a special place in his heart!

At 3:44 CST the first of Will's new, life saving cells reached his body.

The cell infusion took about two hours - which was double the time it took Kate to receive her cells. Marrow cells are transfused without any type of pump/ pressure component in order to limited damage to the cells. Gravity is the only thing that aids in the flow!

I've blogged about it before but the actual transplant is very anticlimactic. It is very emotional to witness but medically, it is relatively easy. It was so easy on Will that he just slept through the entire thing! Ha!

Going through this process for the second time was equally emotional but different at the same time. We knew what to expect, we know what a full recovery is like, we have witnessed failures. We  are just in a very different place than we were when we sat three doors down on August 31, 2011.

Despite any differences, we were still completely overcome with gratitude for the donor that has given Will a second chance. June 12 will forever be a monumental day for our family. Not only did Will turn 14 months old, he also celebrated his re-birthday!

We've got a LONG and HARD road ahead but we are praying the Lord will bless Will, bless his new cells, and allow him to recover and live a long, healthy life!

June 12, 2013

Day 0: Dear Donor

Dear Donor,

As I sit here in my son's hospital room, 15 hours before he is scheduled to received your marrow, I find myself reflecting on so many emotions.

The fear my husband and I had when we discovered that we were unexpectedly expecting our second child. We were fearful because we were aware of our CAMT carrier status. Aware that this baby might follow in big sister's footsteps and also require a life saving bone marrow transplant.

The heartbreak that came in November 2011 when we learned that our second child was a boy and had CAMT. I was 16 weeks pregnant and so heartbroken that the innocent child I was carrying would have so many hurdles to jump from birth.

The joy that I felt the moment sweet Will was born. In that instant, when I heard his first cry, I was filled with unconditional love and was able to temporarily forget about that journey we were about to embark on.

The anxiety that came in the form a phone call in April 2012 letting us know that Will's original donor was no longer willing to donate.

The grief that consumed me while we were "donorless" and terrified that a match may not be found in time.

The hope when our coordinator confirmed that a 27 year old male from another country agreed to donate allowing us to move forward with Will's life saving transplant.

I spent many days focusing on the fear and heartbreak of our situation. I spent many days so consumed with anxiety regarding my son's second chance at life.

But today? I am completely consumed with hope and thankfulness!

I am hopeful for Will's future. Hopeful that my family of four will be able to continue our life together as a complete family unit. Hopeful that Will will go on to experience life and do big things (and little things too)!

I am thankful for YOU. Your decision to selflessly donate bone marrow, and save Will's life, is the reason I am able to have hope. I will forever be thankful for your ability to put a stranger's needs ahead of your own.

I know that we will have days of fear, heartbreak, and anxiety ahead. I know that we are not exempt from sorrow simply because Will has a second chance at life. But I am confident that we can handle anything thrown our way because of the hope we now have for Will's life.

And that hope? It would not be possible if it weren't for our Lord perfectly orchestrating your life and Will's life.

I pray that you have an easy recovery. I pray that you know just how special you are. I pray that you know just how thankful my husband and I are for your selflessness. I pray that you are blessed beyond measure for the gift you have given our son!

Words will never be enough but for now that is all I can send your way!

Thank you! Thank you! Thank you!
Lindsey Boggan

June 11, 2013

We survived Campath!

I normally don't blog this late at night but Will is actually asleep (something that hasn't happened much since he's been in the hospital) and I have a few minutes to myself! I wanted to document these pictures/ days before I start forgetting things so a late night blog post it is!

Will started Campath Friday, June 7. Campath targets lymphocytes and on Friday Will's lymphocyte level was pretty high. The higher the lymphocyte count, the harder the infusion is on an individual. Will started his infusion around 10am and within 20 minutes he was throwing up and miserable. I was shocked that he started having a reaction so fast and knew we were in for a long day. We ended up slowing the infusion down and spread his dose over 6 hours. He got sick several times during the infusion and also ran a temp. However, by the end of the infusion he was feeling much better and even had enough energy to play for a bit!

I thought we were out of the woods since Will was playing post infusion but I was SO wrong. Friday night, around 8pm, Will spiked a temperature and started throwing up again. His fever and heart rate were both climbing (fever peaked at 105.6 and heart rate got over 230) and it was absolutely terrifying. Meds were given, cold cloths were placed on his head, a cooling blanket was used, and cold fluids were also given via his central lines. It took several hours but we were finally able to manage his fever. It was the scariest night we've ever had with Will.

Thankfully the remaining three Campath infusions were much easier. Will did spike a fever Saturday night but it peaked at 102.5 and came down pretty quickly. His infusions Sunday and Monday went well with minimal side effects!!

I can't believe we are about 15 hours away from Will receiving his new cells! As of 10pm CST on June 11 (so right now as I am writing this post), Will's cells were in Houston being processed! His donor is International so the cells have had a long journey to make it to Texas!

Alex and I are asking all of our family and friends to wear green tomorrow and to spread the word not only about Will's journey, but about bone marrow transplant and donation! We have been blessed twice with two selfless donors to save our kids. However, there are so many individuals who are not as fortunate and never find their match. The more people talk about becoming bone marrow donors, the larger the registry becomes, and the more lives saved!

So #teamwill let's work together and spread the word!! Get swabbed; save a life!

June 6, 2013

The calm before the Campath storm

We have had two fantastic days here in room 44! Will has been in such a great mood which has made hospital living a bit easier. We've spent countless hours walking the halls - or should I say Will running the halls while I frantically push his IV pole so that he does rip his lines out! He is super fast and I am not that great navigating with an IV pole!

If you follow me on InstaGram you already know this but Will has discovered the play kitchen in the play room and is obsessed with cooking, pulling out all of the drawers, and pressing every button possible! We make many pit stops in the play room during our countless hours of hall walking!

I've noticed that his energy level is dropping a bit today. He will play hard for about 30-45 minutes and then he just stops and crashes. This is expected and is proof that the chemo is doing its job and killing off all of his bad cells so his body can prepare for his new donor cells!

While I am enjoying these happy days, I am prepared for the storm that will be tomorrow. Will starts two new chemos tomorrow and one of them is the most unpleasant medication ever. Kate had an awful time with Campath and I'm prepared for an extremely hard day tomorrow (and for a rough weekend) as Will receives his first Campath infusion tomorrow morning.

Campath works to destroy lymphocytes. When lymphocytes break down they excrete histamines which causes the body to feel like it is having an allergic reaction to itself. Hives, fever, vomiting, blood pressure issues, and retaining water are all very common, and immediate, side effects. The BMT team here has started experimenting with different pre-meds in hopes of limiting the side effects so Will is being loaded up with several anti-histamines today in preparation for tomorrow's infusion. I'm praying this prep work makes tomorrow go smoother than Kate's experience with Campath!

I can't believe we are less than a week away from his transplant!!

June 5, 2013

Days -9 and -8

Today is officially Day -7 but I wanted to play catch up and document Will's first few days in the hospital!

One thing I am trying to do this go around is take a picture with my DSLR every day to better document this process. I really wish I had more non iPhone pictures from Kate's transplant journey so I'm hoping to have more "real" pictures of this process for Will.

Here's a glimpse into hospital life thus far! We both need more sleep but hopefully that will come as Will adjusts to the noises and interruptions that come along with living in a hospital and receiving various medications around the clock!

I received several questions about why Will is on anti-seizure medication. The chemotherapy he is receiving right now (Busulfan) comes with a high risk of seizures. In order to decrease this risk, patients are given anti-seizure medication to bring specific levels within the body up to a certain point. Yesterday, despite several doses of meds, Will's level was not nearly high enough which resulted in an additional "loading dose" being administered. The medication caused Will to feel a bit off so day -8 was not Will's best day. I know harder days are ahead of us but yesterday was our first glimpse of Will not feeling well due to medications administered.

There are no major treatment changes today but tomorrow Will begins some pre-work for the switch in chemotherapy that comes on Friday. The drugs he will receive on Friday are awful and kids tend to have immediate reactions. We are not looking forward to this at all.

On a different note, my dad had emergency quadruple bypass surgery yesterday morning. As of the latest update he is still in CVICU and is on a ventilator due to some oxygenation issues. Please pray that he is able to lose the breathing tube and properly oxygenate his blood ASAP!

As always, a huge thank you for the love and support being sent Will's way!!

June 2, 2013

Day -10: Central lines in & Admission

Will had surgery on Friday to have his central lines placed. These lines will literally be his life line over the next few months. They will administer chemo to kill off all of his "defective" cells, give him his new life saving cells from his donor, allow blood and platelet transfusions to sustain his life as his blood levels will literally be non-existent for weeks. They will also administer medications that will allow Will's body to cope with everything he is facing. Because of this, Friday was a pretty monumental day.

I wish I could say everything went off without a hitch. But, I cannot. The day was stressful. The surgeon was an ass (no other way to describe him) that treated me like an uninformed mother. I yelled. He yelled. I won. He apologized. It was not a fun day.

But, all that matters is Will's lines are in, they are flushing beautifully, giving back wonderful blood flow, and appear to be functioning perfectly! (Can you tell I've officially put on my nurse mom hat again?)

Today is officially day -10. This means that in 10 days Will will receive his life saving cells and will official begin his new chance at living a long, fulfilling life!

It also means that today is admission day! At noon today we will be residents of the 8th floor of Texas Children's for an indefinite amount of time. I'm praying it is around 40 days (similar to Kate's stay) but it could be more, or less, depending on how Will does will everything!

I am filled with every emotion possible as we prepare to start this journey. Denial has been the strongest of all emotions over the past few days. I'm sure reality will hit as I sit in a hospital room and readjust myself to the life of a BMT patients mom.

This evening Will will begin anti-seizure medication to prepare his body for chemotherapy. Chemo (busulfan) will start at 8am tomorrow morning and will run every 6 hours for 4 days. After those 4 days we switch to Campath in the AM and Cytoxin in the PM for another 4 days. At the end of those 4 days, Will's conditioning regime will end and he will have a day of rest before receiving his cells!

I will try my best to update daily. My updates will most likely happen in the evening once Will has gone to sleep (if he actually sleeps in the hospital - Kate did not sleep unless I was holding her). If you want the most up-to-date information about Will's condition, prayer requests, etc head on over to the blog Facebook page (link) as that is where I (or my sister) will be frequently updating!

Thank you to each and every one of y'all that is walking this journey with us! #teamwill is amazing and I am so thankful that my sweet boy has such an amazing support group!

We will get through this and Will will be a survivor!!!!!

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