It has been a few days since I have given an update-sorry! We are very busy trying to get things in order before Tuesday check-in into UW Children’s Hospital, Madison.

We have received most of his tests back that were done at UW hospital and all look very good. There was a small hemmorhage detected in the front of his brain, 3mm, but doctors aren’t too concerned, they say that it is old and nothing can be done with it now. It could have come from one of his very low platelet days right before a transfusion.

We are still waiting for results from Dean, this is why we wanted all tests to be done at UW so we would have all our information reviewed by the BMT doctor before we checked in on Tuesday. Either way we check in on Tuesday (July 1) and start chemo on Wednesday, July 2 (day -10). I can’t lie, we are scared to death as to what Hayden will have to go through.

Some rules for Hayden’s stay are:
1. Visitors are limited to immediate family only to keep out germs.

2. No live plants or flowers will be allowed in Hayden’s room, cards are welcomed
3. No children can enter Hayden’s room, must be over age of 7. Sadly, Abby too.
4. Anyone staying with Hayden can not eat or use restroom in his room.

I am trying to put together a photo book for him to look at while we are in isolation of family and friends. I seem to have lots of pictures of the Blatter clan (thanks to Grandma Sue) but I would love pictures from the Augustine clan! Hopefully JoAnne will come through for me!

Hayden’s health is pretty good these last few days, he got his transfusion on Wednesday along with IVIG to boost his immune system. He hung out with the day treatment nurses for a few hours while Rick and I met with the BMT doctors to finalize the plans. He was in between his “ladies” behind the nurses station when we came down to check on him. It was soooo cute seeing him with his IV pole flirting with the nurses.
The usual look on his face during transfusions is saying “hi ladies” as nurses walk by our room and wave at him.

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The tests last week went really well. Friday was the hardest day because Hayden could not eat most of the day.  In the morning was his GFR proceedure, they put a small amount of radiation into him to see how his kidneys would filter it out and how they would react. They drew blood at two different periods to check results.
Hayden was able to eat in between the set of tests and have clear liquids throughout the day like juice, so two weeks ago, I started giving him some juice to get him used to the difference in formula and sweet juice.

In the afternoon was the CT Scan, for this he had to drink a coagulant at 3:30.  It could be flavored so Rick picked banana and he seemed to like it. 45 minutes later he was injected with Barium which is used to make parts of the gastrolintestine opaque. This gives a better view for the technicians and doctors. The CT looked at his head, sinuses, chest, abdomen and pelvis for any sign of infections or other concerns that may be an issue during the transplant.
We will get test results on Wednesday at our 3pm conference with the transplant doctors.

Since these tests dehydrated Hayden, we were to give him plenty of fluids. Once he got home Friday, he drank 2 8oz bottles and a 4 oz juice within a 3 hour period. By bedtime he was flushed out and back to normal.

Saturday morning my long time friend Jenny Ostrenga came down from Green Bay to visit. We met up with my other long time friend, Kate Pelzer from Waunakee, and her son Michael who just turned 1. We all, including Hayden, went to the farmer’s market on the capital square in Madison to shop. It was so nice to get him out of the house, he just sat in his stroller and watched everyone go by and when we left the farmers market he continued to watch Michael who is crawling and just starting to walk. I think Hayden picked up a few tips from Michael in the crawling department cause last night we was practicing with his hind legs bent and arms locked and ready to move!

Tomorrow we have the Busulfan test which is a small dose of his chemo. They draw blood at very specific times to see how his body is absorbing the drug. They then can determine the exact amount to give him for July 1. It should last most of the day.

Abby comes back from Iowa tomorrow too. We have really missed her, but we know she is having a great time playing at the park, helping Kristin with her foster kittens, visiting Chris’ pigs, playing with Teban and Gracie II (dogs) at the farm, and being in a parade with Kristin!

It is Thursday and we are almost done with the tests. Tuesday’s platelets went well as usual. Wednesday was the VCUG without sedation. Which allowed him to eat and drink his formula as usual. He did really well even with the part where they inserted a small feeding tube into his peepee, pumped some dye into his bladder and we got to watch as he peed out the tube and the dye.  He did it all in record time. Some kids take a long time to figure out the discomfort will go away once you start to urinate, Hayden just went for it and peed!

Today was the ultrasound which measured the kidney sizes and they recorded their function. We will get results next week from the Urologist.

Friday will be the hardest day for him since he is not allowed to eat, only drink clear liquids most of the day. Rick will bring him to this one and I can come if he gets too cranky. The day treatment nurses have a playmat set up for him this week so we don’t chance him falling off the bed since he is soo mobile now!

His first tooth is coming in on the bottom, you can just feel and see the sharp little tooth piercing through the gums! FINALLY

Since we have a check-in date planned for UW we really have to get the pre-BMT tests scheduled. So all next week we have tests;

Monday-9am Echogram, 10:30am Audiogram
Tuesday-1pm platelet transfusion
Wednesday-am VCUG at UW (dye test for kidneys)
Thursday-am Ultrasound
Friday-am GFR hydration (lab tests), CT scan

The following week we have the Busulfan Parmacokinetic study, which is the chemo drug that he will be on after July 1. They will give him a dose of the drug and watch to see how fast his body absorbs, so they know how much of a dosage to give him for his actual treatment.

On Wednesday, June 25 we will again have Platelets, IVIG, and our final consultation with the BMT staff to sign all the consent forms and discuss details of the proceedure.

As this date comes closer, Hayden is starting to sleep through the night as I stay awake thinking about what that little man has to go through these next weeks and during his chemo. It is finally hitting me, where as I think it hit Rick a lot earlier, when I was just focused on keeping him healthy, lotioned up, medicated, and living a normal life.

So many wonderful friends and family have come forth to donate their time, services and words of encouragement to help us get through this. We plan to stay at the Ronald McDonald house for the first week or so while he undergoes his chemo (if vacancy). This will help us save on gas and allow us to be close to him at all times, one of us will stay in his room 24/7 of course throughout the 6 weeks.
Abby and the dogs will remain at our house at that time with my sister, Kristin-I hope, and switch off with grandparents after that. We really want her to remain in daycare to keep some normalcy in her life since her parents won’t be present for days at a time, which is going to be different for her.

more to come….

You all have been waiting, asking when this all will happen.  July 1 we will check into UW Children’s Hospital, Madison WI to begin the transplant conditioning protocol.  “Day Zero” is the day the stem cells enter into Hayden’s blood stream, when his immune system is fully suppressed and his bone’s have been cleared of his marrow.   This is scheduled to be July 11, barring any issues arising.

Hayden will be in the Bone Marrow Transplant unit for at least 6-8 weeks (longer if complications).   He will then be released to go home with many stipulations and follow up clinic appointments like platelet transfusions and IVIG treatments.

Hayden’s health update
Hayden is still fighting his cold but all fluids remain clear and are not causing congestion. Yah! He also was put on Amoxocillin (sp) for a positive anal strep culture. 

We finally found a remedy to his severe cradle cap.  Dr. Taylor prescribed drops that we put on Hayden’s cradle cap and rub it around. In the first dose, it cleared up but we continue to apply it as prescribed.¼br.  We still apply Aquaphor lotion from ear to ear  on him so his eczema stays at bay. If he scratches his dry eczema, he creates sores, which can become infected. So most of the time it looks like Hayden has greasy hair even though it was just washed.

As needed, I apply another ointment to any yeasty areas on his skin, under his neck and leg area as needed. It comes and goes.  All the skin irritations are related to the WAS.
TMP Salfate is still given to him on the weekend twice a day, which helps boost his immune system.

I finally figured out the amount of medical supplies to order from Home Health for a two week period.   It shouldn’t be too hard to count up all the saline, safe-sight-valves, gloves, etc I use in a weeks time, but since I am also drawing his 1ml of blood twice a week it adds a few more supplies to the overall inventory.

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Tuesday was not only platelet day but Abby’s 4th Birthday as well. Since she had a birthday party at Marci’s daycare that day, she went there instead of with Grandma and I to UW day treatment. She gets bored at day treatment even though they have a toy room and Tyler’s Place to visit.

Dad brought home a raspberry layered white cake for Abby and we put 4 candles in it and sang Happy Birthday. Hayden loved the cake and of course the ice cream just as much as we did. I am guessing that a dairy allergy doesn’t exist in him with as much ice cream as he has eaten the past few weeks.
We seem to be celebrating her Birthday throughout this week since Aunt Kristin will be coming on Friday with a pretty large gift and we will see our other relatives for my cousin’s wedding shower on Saturday morning. We end the weekend with Chucky Cheese on Sunday with Corinna, Abby’s cousin.

On Tuesday we stopped in for some more platelets, he was at 23k. The plan was to draw his blood for the lab before we started platelets. I told the nurses that there should be an order for 10ml of blood to be drawn from Hayden into a green vile, for St. Mary’s lab. In notime Dr. Delgado and the nursing staff had everything rolling.

As I told you a few days ago, it was arranged for me to initially draw the 10ml of blood from Hayden. After I talked to Rick and Grandma Sue (RN) we decided that this is too big of a job and too risky for me to be doing. Come to find out, 10ml is the MAX that can be drawn from a 23 lb child. So caution definately was needed.

My mom was staying with us for Monday and Tuesday so she was able to come with us for this appointment. She got to see what Hayden goes through each week for his platelets and got to spend more time with us instead of going back to GB.
I left my mom with Hayden at 3 to drive over to St. Mary’s so I could drop off his blood vile and get my lab work done. It took more time to find the right part of the hospital than it did to give my blood and have a consultation with Melisa, the genetics counselor. She was wonderful in explaining more about how these test are going to happen in Washington. Dr. Hans Olof (I love saying his name) is widely known as the WAS doctor. He has researched and knows tons about this autoimmune disease. He and his staff have agreed to run tests on Hayden and my blood to determine a number of things;
1. They will be able to determine if I am a carrier (which I am pretty confident I am, with my ITP issue)
2. They will look at his genetic makeup and hopefully determine how he is producing protein even though ALL the letters in the coding are deleted-that is what the protein reads. Protein makes up the immune system.
3. Cell lines will be created with our blood-I think this is where they actually grow the lines to determine how they work in the body.
4. This testing will also benefit Hayden post transplant to determine how to address his issues.
5. It will help answer questions that other WAS patients have as well.

We will have a time frame for a turn around time soon.

Hayden still has a cold that both Abby and he got on Friday. Abby shows no sign of the cold now, but Hayden is still snotty and coughing. Hopefully it remains mild and doesn’t turn into an infection. He is really struggling with a chapped mouth. We gob on the vaseline, but with him drueling so much from teething it doesn’t help. He wakes up from naps and in the morning with a blood covered mouth and bloody sheets. Each day I change his sheets and wash his “cuddly” which is a small, very soft blankle with a head of a lamb on it. He will hold on to the small little ears as he falls asleep or put it over his eyes as he grunts himself to sleep. My mom has bought a second one, so we can alternate them while the blood stained one is getting washed. The new one is a dog, but he doesn’t seem to notice the difference yet. As long as there are ears for him to hold, who cares!

He also has been getting blocked up. Without being graphic, his Hemotologist prescribed an oral med to help him have a bowel. I have cut back on the grains he has been eating, but I can’t bring myself to give him pruns just yet. We will try massage and the med first!

Once one thing is resolved with him, we go into another issue! We have no time to get into trouble at the Blatter house!

This week we have a full schedule with appointments.
We still haven’t ironed out that lab appointment where I am to draw all of Hayden’s blood out of him (exagerated a bit) at St. Mary’s. We found out that even Dean Oncology won’t draw from pediatric hickmans. As of now we plan to get his lab drawn at day treatment in UW tomorrow while he gets platelets. His count is at 23k today.

We now have scheduled his Urology appointment as well, including the ultrasound. It is June 19th and with a tentative VCUG to follow right after. But we do have to make sure he is transfused before the proceedure, so we might go back to UW for that to be safe. We will get the okay from Dean soon on that issue.

 Thursday Hayden will go for his 9 month check up. I think I forgot about his 6 month one, but with being at the Dr. every week, we pretty much know weight, height, etc. We look forward to visiting Dr. Taylor with no big issues, but a lot of growing and teething!

 Hayden is sitting on his own now, and still loves screaming! He loves being outdoors and eating cheerios too!

Hayden’s flower garden is planted and in growing motion. I will have pictures soon.

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