GABE & TAYLAR

UPDATE ON MADDIE

Yesterday was the day that Brandon moved to Quantico and our fun family time together came to a close. So he will be driving a ton and hopefully we will do some too to help alleviate the burden on him, and so we can see our new home. Today the movers are delivering our stuff, so wish him luck.

Maddie, my sister Kathryn, my mom and I had a very pleasant lunch yesterday at California Pizza Kitchen at Southpark. Maddie not only sat in her high chair (that rarely happens) but she even ate quite a bit of solid food (other than chips). So it seems her appetite is coming back. I had called the clinic on our way to see if we had any lab results back from either the Parvo test or her MLL gene test, which tests to see if there is any lingering leukemia in her bone marrow. While at lunch, I missed a call from our nurse Kristen. When I called her back she said that the Genetics Lab had a preliminary report on Maddie’s MLL test and that they were faxing it over. She said either she or Dr. McMahon would call when they got it. That scared the living daylights out of me for a number of reasons. Anytime she says the doc may call, that means bad news that she cannot give me herself. Also, these genetic results have taken 2 to 3 weeks to get back to us each time. The only time we have gotten a result in 9 days is when she was first diagnosed and the result was positive for cloned leukemia in her marrow. So I am freaking out as we drive home from the mall, making mental plans as to what things I will need to take with us to the hospital. Thinking I will have to tell Brandon to turn around and drive straight back. Any of you who know me know how crazy I can be, and days when we are getting test results are not good in our house. I try very hard to remind myself that worrying does not help anyone, and that I cannot change the outcome of any of this. Unfortunately, my head just doesn’t always get that.

So we get home and I get her down for a nap, all the while thinking that it has been forever since I talked to the nurse and so something must really be wrong because otherwise they would have called by now. Anytime we have to wait long, I dream up scenarios about how our oncologist is mentally preparing himself for the speech he will have to give us. It has been over an hour (to receive a fax?) and I call again to check and she doesn’t answer. I also know Kristen knows my number when she sees it on caller ID, and the fact that she doesn’t further reinforces my fears that they are avoiding talking to me because something is wrong.

Just as I have looked up old results in my book of her labwork, and seen that there was a time where the result came back in 9 days (and the result was good), my phone rings. Kristen let me know that the result was normal. There was no evidence of MLL rearranged leukemia in her marrow. I have even gotten my fax with the results to file away in my book and they look just like the last ones.

So now that you all know how mentally deranged I am, we can celebrate the fact that Maddie was officially in remission July 14th when she had her Bone Marrow Aspirate done! While I believe strongly that she is going to survive this, I sometimes need medical data to reinforce it. There are many other parents who believe in God, who pray fervently for their children every waking moment, and who believe that God has a special plan for their child. All of the children that I know who have had this disease are loved and cherished by their families and friends. Many have powerful circles of prayer that speak to God on their behalf daily. But almost half die anyway. This disease is incredibly cruel. Please pray for a cure so that no child has to go through this!

Love to everyone,
Liz, Maddie, and Brandon

I just want to clarify some things I have said earlier today on this page. Despite my questioning whether or not my daughter will come through this, I am not in any way questioning my faith. On the contrary, my faith is stronger than it has ever been. I just know that God’s plans for my baby may not be the same as MY plans for my beautiful girl. I would love to think that His plans line up with mine, but I cannot say that His plans have been revealed to me as of yet. My precious daughter and this experience has taught me so much, and I certainly will appreciate every moment of my life in a much more real way than I ever could have without going through this.

Some of the most faithful people I have met along this journey so far have lost their children to cancer. They too believe in all of the same things I do, but nonetheless, they are left grieving and hoping they can come to terms with their loss. There are certainly times where I question the fairness of making a completely innocent baby go through this, but I just try to squash those thoughts and remain focused.

I just want to clarify that I am not doubting my faith. I just know that I do not get to make this choice, and unfortunately, we have a long way to go before we get to know the end result of this. My goal along the way is to enjoy every moment with Madeline and do everything I can to make every moment of her life full of joy.

If you notice that the tone of my updates have changed a little bit lately, it is because of the place where we are in treatment. We are into the part of her treatment where relapse is most likely. This means that for the next nine months to a year(sort of a make believe cutoff date I have in my head), Maddie’s chance of relapse is the highest it will ever be. Her chances of surviving a relapse are basically in the single digits. So every time we have her blood checked, the results are basically life and death to me. I try to confine my worrying to the period of time between when they take the blood and when they give me the results (30 min to 2 hours). So yesterday’s marrow result worrying was a little more than usual, but only because the nurse warned me I was about to get a result. I truly try to leave all of it out of my mind when I am with my baby the rest of each week. As soon as we pull up to the clinic to get her counts checked I get sick to my stomach with the worry, but it only lasts until we get her results. I know worrying is completely unproductive, but since I am a worrywart by nature and always have been, I feel I should be allowed to worry for at least that small portion of my week.
Sorry I am so darned long winded,
Liz

More by Matthew West

Please keep the Carlson family in your prayers! Their baby Elijah lost his battle with leukemia on May 20. Please ask for God to provide them the strength and comfort to continue each day!

PRAYER REQUEST

My nephew Mike left for a 15 month deployment to Afghanistan on Sunday. With increasing violence over there I am asking for everyone to please pray for his safe return home and strength to get through these next 15 months.

As always please keep all of our military and their families in your prayers!

GOD BLESS OUR TROOPS!

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MY BIRTHDAY & ELIJAH'S ACCIDENT

My birthday was filled with what started out as a nightmare and ended as a blessing!

On Thursday night Elijah and his friends decided to light a bottle rocket and used a seemingly empty oil jug to sit the rocket in. When Elijah bent down to light it the spark from the lighter ignited the oil fumes and it exploded in his face. His friends brought him right home and Jim called the nurse hot line right away. After we got him to take his face out of the sink long enough for us to see we headed for the ER. Now his face and neck were red but his lips had started to swell so even though I thought that it was not too bad just to be safe off we went.

We got to the ER within 20 minutes!

Now we have never gotten seen at the ER, even on a slow night, in less than 3 or 4 hours. So when we walked in and told them what happened and they took him right back we were shocked. There were 5 people swarming around him within seconds! Now his face and neck were bright red but we still thought it was not serious. That is until this young petite female doctor comes to talk to us and tells us that they will be sedating him so that they could intubate him and he would likely stay on the respirator for 3 days! She told us they were concerned about his airway being compromised by swelling and they needed to have him intubated to air lift him to a burn center.

Now I am not sure that she fully understood how she had turned my whole world upside down! I felt like I was watching someone else because this could not be happening to my child!

Now I had to hold it together for them to explain to Elijah what was going to happen! He took it all in stride like a champ! I kissed him and told him how much I love him then we were made to leave for them to intubate! I made it to the hallway and lost it! Naturally Jim was there to help me pull it together and assure me that he would be okay! This is why we work so well together he is always calm when I am a huge mess! So about an hour later they come get us to go back with Elijah.

It felt as though I had hit a wall when I walked through that curtain! There was my baby with tubes coming out of him and a machine breathing for him! His stomach tube that would normally be inserted through his nose was also put in his throat because his nose was too swollen shut for them to get the tube in. He had blood around his nose and blood on the floor. I have never seen anything so heart wrenching! I broke down and almost walked out of the room when an Ensign (Navy nurse) came over to me and rubbed my back and told me that it would be okay! He told me how he had a 10 year old son also named Elijah and he could not imagine having him lying there! We were very blessed with some awesome people caring for not only Elijah but me as well! Now we were waiting for them to find a hospital with a burn center that could take him and transport him. This ended up being no easy task since their first 4 choices were unable to transport him or had a full burn center. There was also some concern about the weather and flying. So for 3 hours I had to sit and watch my child go into a full panic, almost like convulsing, every 20 minutes when his sedation started to wear off. He would rear up and grab at the tubes while still slightly sedated. Thankfully he never fully awoke and they pushed his pump for more medicine very quickly but those few minutes were an eternity to me! It felt as though I was being suffocated! Again thank God that Jim was there because when Elijah would flail, fight and gag a lot I could not get out of the room fast enough! We also had Anna get to the hospital shortly after he was intubated so between her and Jim he had someone to comfort him when it got too much for me to watch! We also had to see them suctioning fluid from his lungs so to say I was a terrified mess is a huge understatement!

Jim and Anna agreed that when he was better he would want to see pictures so they used their phone to get this image. I did not really feel it was appropriate but I was quickly reminded that when he was in the ER getting his chin stitched he made me get pictures of the gash before they stitched it closed. So knowing my boy i allowed them to take the picture!

Finally at about 12am they told us that he would be transported to Wake Forest University Baptist Hospital in Winston Salem.

FOUR HOURS AWAY!

After some discussion we decided, since it would be at least another hour and a half before they would be able to get him, Anna and I would start the long drive and Jim would stay at the Naval Hospital and watch over our boy!

I have to admit as much as I did not want to leave him, just in case, it was a relief to not have to watch the trauma every 20 minutes! Jim shared with me the following day that he knew he needed to get me out of there before I had a total break down!

So we were off on what seemed like a 12 hour drive! Jim called me to let me know that he was being transported to Ellis Airport to be flown in a fixed wing medical plane to Winston Salem. It was a 45 minute flight so we were less than an hour behind Elijah. Jim asked a flight nurse if she would call him when they landed so that he could call me to let me know he arrived safely. My honey was on his toes the whole time! I prayed the whole way there that God would provide some way for them to have him off the respirator by the time we got there. I knew I would be in trouble having to face this alone without my best friend as a buffer so I had a talk with God during the trip and asked him to either provide a way for Elijah to be off the ventilator or give me the strength that I needed to be there and be able to help Elijah.

We finally get to Winston Salem within an hour of Elijah arriving and I am allowed back to see him. Nervously I walk back alone because they would not allow Both Anna and I back. As I get through the curtain I see my baby sitting up off the ventilator!

GOD IS GOOD!

He was talking and complaining so I knew he was okay! He felt badly and vomited all day but many, many hours later I am finally given the okay to bring him home! On an aside, I would not send my dog to this hospital the incompetence amazed me! We did however have a wonderful nurse for the first couple of hours and an awesome burn nurse! The burn nurse cleaned his burn and explained to us how to care for him and that his burn would likely worsen for up to 4 days so we were prepared. Thank God he was not more serious because the rest of his care was terrible!!! It took 4 hours just to get his anti-nausea medicine. So I watched him suffer even more vomiting with a swollen, blistered face and lips!

So after more than 36 hours with hardly no sleep we make the 4 hour trip home! On the drive home my friend Fay calls me and I tell her of the ordeal. I then tell her that this had to have been my worst birthday and she says I guess so. Then I look over at my baby asleep in my car going home and tell her you know what I am wrong this is my best birthday!

MY BOY WAS OKAY AND I WAS TAKING HIM HOME!!!

So we get home late Friday get showered, have something to eat and some cake and go to bed!

Here he is the next morning not feeling so great but not nearly as swollen!

Last night doing okay.

Then this morning the burn is looking a little worse!

He will be seeing a plastic surgeon in a week so we will know more then but he is doing very well considering what was expected. Keep him in your prayers for an easy recovery and thanks for all the calls about Elijah. Also, I really do appreciate all of the calls and emails for my birthday!

Anna and Elijah.

I have to mention that I felt very blessed and grateful to have Anna at the hospital with me. She took such good care of him and allowed me to get some much needed rest. She also kept me awake as well as distracted during the long drive there. Thanks Anna! Love ya!

Please check below for an update on Maddie and remember her and her parents in your prayers! I can not imagine watching my child fight for their life as they have had to do! Their strength amazes me!

MADDIE UPDATE

We just wanted to let everyone know that we will be going in Monday for a procedure. Maddie will have a bone marrow aspirate (her first in a long time) where we will find out if she is still in remission. We believe she is, but please pray for her marrow to be clear of leukemia. Maddie will also get a lumbar puncture where 3 types of chemo are inserted in her spinal fluid. She will also receive IV chemotherapy at the clinic after she has been released from the recovery area of the hospital. This makes for a long rough day for her because she is not allowed to eat in preparation for it all. Following this she will be on steroids for 5 days and then the week after we begin daily oral chemotherapy at home in addition to weekly visits for IV chemo. Maddie had a lot of tough chemo over the last 6 weeks, but she is finally seeming to shake off the effects it had on her and get back to her old self. The nausea seems to be gone or at least diminished and she is beginning to have an appetite again. She is very close to walking and takes 15-20 steps at times. She is still a little clingy and likes to be held alot, but that I don't mind. She actually took all of her oral meds this evening without us having to jam them down her throat, and that is a major improvement which makes our job as parents much easier. Thanks again for all of the nice comments and support for Maddie. She still has a very long road ahead, please keep her in your prayers. Love, Liz, Brandon, and Maddie